CDH Round Two

As if hearing "something is wrong" during an ultrasound the first time wasn't enough… 

In October of 2019, my husband and I were overjoyed to learn we were pregnant. That joy quickly turned to fear when at our first ultrasound we were told something was very wrong with our baby. At our 18 week ultrasound, not only were we told we were going to have a baby boy but we also learned he had something called a Congenital Diaphragmatic Hernia. Like many newly diagnosed CDH families, we had never heard of CDH so we spent the remainder of the pregnancy looking up every possible outcome. Before we knew it, the time came to deliver our son Avett. We had no idea how long we would get with him. We had no way of knowing if he would even make it through delivery. We were terrified.

Ready or not our CDH journey was about to begin… 

On March 17, 2020 Avett Paul was born. He weighed 6lbs 15oz and had a head full of black, curly, mullet-like hair. After delivery they whisked him away to the NICU with my husband following close behind. There, in the West Wing NICU at Levines Children's hospital in Charlotte NC, our Avett put up the fight of his life.  

On March 19th, 2020 through bravery, he won his battle with CDH and passed peacefully in our arms. God blessed us with 40 hours, when doctors had promised us none. That day was hard. Who am I kidding? The whole pregnancy was mentally and emotionally exhausting. We were devastated. 

Time went on… We grieved. We grieved our son. We grieved our empty arms. After much genetic testing we were assured there was no reason we could not have a healthy baby. We began trying and discovered we were pregnant again. In June of 2021 we welcomed a 5lb 9oz beautiful, healthy baby girl. All was right in the world and we were overjoyed. 

When our daughter was one year old, we decided we wanted to have another baby. In August of 2022, we found out we were pregnant. We decided to bring our daughter to the first ultrasound, knowing she would be so excited to see her see her baby brother or sister. At the appointment we anxiously waited, praying we would hear a heartbeat. Then there it was, a heart beat. We were overjoyed. As we talked, the ultrasound tech, who we had grown to love through our journey with Avett, paused, looked at me and said, "Let's talk." She knew I did not like surprises and would rather her share her concerns immediately. The look on her face told me everything I needed to know.

“Something was very wrong.”

She shared that our baby’s neck was measuring thick, indicating a chromosome abnormality such as Down's Syndrome or Trisomy. When she left to get the doctor, I looked at my husband who holding our daughter and said ''This cannot possibly be happening again…” We left the hospital with a follow up appointment scheduled for week 14, praying our baby would make it. The baby did and after the ultrasound our doctor and a genetic counselor sat us down in a consultation room. With tears streaming down both of their faces the doctor stated "I can't say for sure until the anatomy scan, but it looks as if your baby's stomach is in his chest cavity. This baby also has a diaphragmatic hernia."

How? Why? There is no possible way! There is only a 2% chance of having a second baby with a diaphragmatic hernia. How could this be? I was devastated. 

Our only experience with CDH was death. We knew it was going to have to be a miracle for this baby to make it. I will never forget telling our family. We all kept trying to find ways the doctors may have been wrong… After all it was only week 14 and everything being so small meant they may not have seen clearly. Right? 

In October we learned that our baby was a boy! We decided to name him Anders. At our anatomy scan we found Anders had more similarities to Avett than we would like. We also found that though they were similar, Anders had a better chance at survival. There were a lot of negatives at that appointment but compared to Avett's anatomy scan there were actually a lot more positives. Unfortunately, my brain only heard the negative. I knew God was ultimately in control but all of my hope was lost. From that moment until about week 30, I could not see how there could possibly be a good outcome. I just could not see us bringing our baby home. I had to mentally prepare myself to accept that our daughter was likely going to be an only child. I began thinkinging about and planning Anders' celebration of life. I prepared myself to have only moments with him after he was born.

“I prepared myself to say goodbye before I had even said hello.” 

Before we knew it, we scheduled my c-section for March 30th, 2023. Ready or not, this baby would be born and we would love him, fight for him and support him for whatever time we were given. On March 22nd, a week before my scheduled c-section it was time to face whatever was to come. Anders was going to be born. I was so nervous. I did not want to face the days that were ahead. I did not want to make the decisions I knew that were going to have to be made. My baby showers were no longer fun because I was opening gifts with the mindset that my baby would never get to use the items gifted. I just wanted it all over. Pregnancy and childbirth had lost their "glow." . 

On March 22nd at 7:30am, lying on the operating table with tears streaming down my face, the time had come to welcome Anders John into the world. Anders let out a small cry, before being taken away to be stabilized.

“I held my breath as he tried to take his first.”

I was unable to see him until later that afternoon. Things were stable. Everything looked stable. Though this made me extremely happy, I also knew this was the "honeymoon" phase. I knew that, almost exactly three years earlier and just a few pods over, we had faced a very similar battle. How was this one going to end? Would things take a terrible turn out of the "honeymoon" phase? Would we be signing a birth and death certificate all within 72 hours? I know this is not the most positive outlook, but when you have lived the CDH life, lived a CDH loss… positivity is hard to come by.

After 24 hours filled with worry, fear and doubt we visited the NICU and were greeted with the most amazing news. The neonatologist looked at us and said "You are going to be so proud of him, I know I am." Not only had Anders survived the night, he was stable enough to come off one of the machines. I couldn't believe it! The good news did not stop there. She proceeded to tell us he was stable enough for hernia repair and that the next morning he was going to go in for surgery. My whole perspective began to change. At 40 hours old, we were able to hold Avett because we were having to tell him goodbye. At 40 hours old we held Anders because they told me "no baby should have to go into surgery without a hug from their mama.” So that evening, amidst all the tubes, ventilators, wires, monitors and beeping, I held Anders until my legs were beyond swollen and numb. I took in that moment as if it were my last. The goodness of God was being played out right in front of me. 

The blessings did not stop there. Anders’ surgery was a success and a mere 63 days later, we took him home! This was a day we had only ever dreamed about.

Four days later, we found out he had survived not only a left sided diaphragmatic hernia (LCDH) but he also had an undiagnosed right side diaphragmatic hernia (RCDH).. We were then unexpectedly re-admitted for low oxygen and the undiagnosed RCDH repair. This is very rare and the survival rate is extremely low. So we were proud (and terrified) parents of a double CDH survivor. We also discovered, our boys have a genetic syndrome that was missed through testing called Simpson Golabi Behmel Syndrome. This is an overgrowth syndrome that is accompanied by conditions such as diaphragmatic hernias. Because of this he has to be checked regularly for abdominal, kidney and liver cancer every three months until he is 7. 

Anders John is now a happy, smiley 7 month old. For now he is fully fed through a g-tube. He enjoys his paci, smiling and watching his big sister do anything. He has overcome four surgeries in 7 months; two diaphragmatic hernia repairs; a g-tube placement and his most recent accomplishment - open heart surgery. We are so proud of our double CDH, CHD survivor and we know his brother Avett is too.

Anticipatory Grief: A CDH mother's story....

“I grieved before he came. I grieve a little every day.”

“Sometimes, the what if's weigh heavy on my heart. The truth is, I grieve for a little life that's right in front of me. I break when I think of a future where that grief is realized. I question every decision I make, every decision I might make, the ones I never made. I scroll social media and I find the most heartbreaking posts. It becomes a trigger, a catalyst for feelings that hurt. I try to live, moment by moment, day by day, but there's always an intrusive whisper.”

What is going to happen tomorrow?

“I hurt for the babies I met that never made it home… For the babies I have seen pass since then… For the people who have to keep living while life crashes around them. A part of me has died every single day when grief flashes before my eyes.”

What if I fight and no one hears… What if one day, it's not enough..

“I grieve the moments we have already lost, but I grieve a reality that I know may one day come. I breathe in and out, and I pray you'll be here forever. I've seen your heart stop. I've seen you turn blue and cold. I've seen my world implode while silent screams sound in my head.”

Sometimes, I'm lost in my fears.

“Then, I remember... you're here. I have this moment. From every smirk to every eye roll. I love you every hour of every minute of every day. I live for those moments, for the grasp of your finger on mine, when you search for my voice, when you prove providers wrong. I live each moment, knowing it could always be our last, but praying that we make millions more.”

- Anonymous

Meet Goldie...

Meet Goldie…

Like every mom, Miranda had eagerly awaited her 20 week ultrasound only to be thrown a curveball. While she went to learn all about her baby girl, she left having learned her perfect baby girl may have a rare condition known as a congenital diaphragmatic hernia.

“I remember going to the car and bawling my eyes out. Thinking to myself, what did I do wrong?” 

Soon after the initial appointment she was referred to Dr. Cass at the Cleveland Clinic to have an MRI which would confirm CDH and a possible heart defect called coarctation of aorta. 

 “My heart shattered into a million pieces.” 

Like so many other moms, this was the first Miranda had heard about CDH. She went home after her appointment frightened but determined to learn all she could about her daughter’s diagnosis. Even in the midst of so much uncertainty, life must go on. She picked herself up, put a smile on her face and resolved to hope for the best because her son was watching.

Thus began the arduous journey of commuting more than 2 hours one way, from her home to her doctor for follow ups and monitoring. On these trips her son stayed with grandparents, knowing Mommy and Daddy had to go because baby Goldie was sick.

Miranda was scheduled for an induction at 37 weeks but little Miss Goldie had her own plan! On the morning of the scheduled induction she decided it was time to come naturally! 

Shortly after Goldie made her grand entrance, she was whisked away to the NICU. It would be several hours before Miranda could see her. 

“I sat there in the room all alone heart broken not being able to see my baby or hold her feeling completely helpless”

Shortly after birth she was placed on ECMO and transferred to the PICU. At 2 days old she had her repair surgery.

“I felt my body go completely numb looking at her hooked up to so many tubes and wires.” 

Goldie’s days consisted of x-rays, ultrasounds, echocardiograms, breathing treatments and bronchoscopies. She had her good and bad days but she was never alone, always with a family member right by her side. 

Everything seemed stable until one day it wasn’t. After many attempts to remove her from ECMO she ended up requiring a few circuit changes. It was during this time her pulmonary hypertension got out of control and she also ended up getting sepsis. This is when things really started to take a turn. Even with medications doctors still struggled to keep Goldie’s blood pressure up. One particularly bad night she even required multiple injections of epinephrine. Being touched in any way by the medical team would cause her vitals to plummet so treating her became an impossible task. Miranda was taken aside and told something no parent should ever be forced to hear…

“There is nothing more we can do…”

Mom, Dad and Big Brother were given the chance to hold Goldie for the very first time while still hooked up to ECMO. Though this was a risk, it was one worth taking because at long last Goldie was where she belonged: in the arms of those who loved her most. For 6 glorious hours she lay there, with no blaring alarms, no thrum of machines, no blood pressure drops or spikes… just peace. 

“I knew at that time this is what we needed .”

Goldie was removed from all support and they were told she would survive only minutes. Again, Miss Goldie had other plans and left this world just like she came into it, on her own time 30 whole minutes later. She passed peacefully in the loving arms of her family, who were telling her how amazing, beautiful and strong she was. 

For Miranda, keeping Goldie’s legacy alive has been helpful in her healing. Her greatest nightmare came true, so finding ways to remember the good times with Goldie has been a must. Donating breast milk to a local milk bank in honor and seeking ways to help other families who have lost children are just two of the ways she is doing this. Additionally, the support and love she received from family and friends has been crucial to her grief journey. 

“As a mother I could not have been more proud of Goldie and the fight she had. She will forever be loved.”

Meet Avett...

Like many, Kelsey and John had never heard of CDH until the day of their anatomy scan. While going in hoping to simply find out the gender of their little, they got way more than they bargained for. In addition to being told they were having a boy they also learned he had CDH and Dandy Walker Syndrome as well as a brain and heart defect. They were told he was very severe and that it was very likely he would not make it out of the delivery room. Stunned and heartbroken, Kelsey and John went home and with the help of family and friends prepared themselves as best they could for what they knew would be the hardest fight of their lives.

On March 17th, 2020, after months of prayer and preparation, Avett Paul White made his grand entrance into the world.

Avett surprised everyone. Not only did he make it out of the delivery room, he lived for 40 hours! This gave his mommy and daddy time to cover him with love and prayer.

They were able to take part in feeding, changing, bathing and singing lullabies to him.

After his passing family and friends came together for a celebration of life complete with music, cotton candy, candy apples and funnel cakes. 

Avett is now a big brother to a healthy 19 month old sister named Eliana Kai and a soon to be born baby brother Anders who has also been diagnosed with CDH.

“CDH has changed our lives drastically. We will spend the rest of our lives remembering the precious life it took from us and bringing awareness everywhere we go.”

-Kelsey White

Meet Oliver...

Meet Oliver…

An unexpected miracle after devastating loss.

On August 1, 2020 Kimberly and her husband Carlos discovered they were pregnant. Instead of being excited and jumping for joy, they felt only fear. You see, this was not Kimberly’s first pregnancy. It was not her second pregnancy. It was her third pregnancy and yet she and Carlos remained childless. Their journey to parenthood began in April 2017 when at 16 weeks pregnant it was discovered that their daughter Felicity had no heartbeat. “It was my worst nightmare come true,” remembers Kimberly.

After months of grieving, she and her husband began trying to conceive again. She would go on to have 2 more miscarriages before deciding to seek the help of a fertility specialist. In July of 2018, they became pregnant, this time with a little boy! Dominick. They were ecstatic! Everything seemed perfect. The progesterone injections were working and the pregnancy was progressing. This excitement came to an end at their 12 week ultrasound when they were told 4 words that would change their lives forever…  “Your baby has CDH.”

“I could not believe this was happening, after everything we had been through. I was numb and shocked.”

Kimberly was referred to Johns Hopkins Maternal Fetal Medicine in Baltimore for the remainder of her pregnancy. At their 20 week visit they were told their son’s CDH was extremely severe and they were encouraged to think about Dominick's quality of life. 

“We were faced with the biggest decision… They made it seem like our only choice was to terminate him.” 

Utter devastation. Uncontrollable crying. Questioning. Becoming physically ill. Praying to wake up from this nightmare… and yet again, leaving the hospital with empty arms. It would be months before they felt any semblance of normalcy. She and Carlos could not fathom going through this heartache again so they made the decision to stop. To stop trying, hoping, praying, believing that bringing a baby home would be in their future.

Surprise! Fast forward to August 1, 2020, they discovered they were pregnant. On December 2, 2020, she and Carlos sat at their 20 week anatomy scan hearing yet again, “Your son has CDH.”

“Why? Just Why?!”

This time they were referred to the Children's Hospital of Philadelphia (CHOP). With the team at CHOP behind them every step of the way, Kimberly and her husband vowed to do everything they could to save their son. Things would be different for Oliver. While filled with fear, this time they were also filled with something else. Hope. The staff at CHOP are experienced with CDH and were ready to fight this diagnosis right alongside Kimberly and her husband.

On April 7, 2021 Oliver Allen Spriggs made his grand entrance into the world.

He was immediately intubated and at 4 hours old he was placed on ECMO. He was stable enough to have his repair surgery at 20 days old.

Then at 34 days old, the seemingly impossible happened…

Kimberly was finally able to hold her miracle baby in her arms.

Ollie still had a battle ahead, fighting infections that would nearly cost him his life. With his mommy and daddy, and the incredible team at CHOP by his side he faced each and every one of them!

After 351 long days in the NICU, Kimberly and Carlos left the hospital yet again, this time their arms were not empty.

In January of 2023, Kimberly reached out to the CDH Foundation for support.

Ollie had spiked a high fever and was struggling to breathe. He was taken to CHOP where he was admitted and later diagnosed with human metapneumovirus, which is similar to RSV.

He would spend 5 days at CHOP before returning home.

We would like to extend a big thank you to Kimberly and Carlos for sharing their story with us. While we are so sorry this has been your journey, we are thankful The CDH Foundation could help relieve some of the stress so you can focus on what is most important, Ollie.

If you are reading this and would like to help babies just like Ollie not just survive but THRIVE in spite of CDH, please consider partnering with us! Visit: https://www.thecdhfoundation.org/5tothrive for more information.

Meet Vaughn...

4 months old, 3 surgeries, 2 amazing parents, 1 courageous little boy

“I never imagined I could be this mom with a sick baby. I 10/10 do not have the mental and emotional strength to pull it off, but just like Vaughn has some sort of super human toughness, Bob and I have been forced to hone that too! Even when he’s not the sickest baby in the hospital, like he was the day they put him on ECMO, we will likely always have our challenges. He will always have to be fighting. But GOSH what a sweet boy. He will get through this again one way or the other.”

Vaughn’s initial NICU stay was fairly short, spending only 39 days in the hospital before heading home eating orally and on minimal oxygen support. Unfortunately, his hospital journey does not end there. After a planned eye surgery to remove bilateral cataracts, Vaughn was taken back to the ER for vomiting the very next day. Tests revealed he had developed a bowel obstruction. During surgery doctors removed an adhesion of his bowel to his scar tissue from his CDH repair. During surgery, 2 inguinal hernias and an umbilical hernia were also repaired.

This is CDH. It does not end with the repair. It does not end when you come home. It is a battle. It requires strength, courage, endurance… CDH babies are courageous. CDH moms and dads are courageous. They don’t want to be, they HAVE to be.

Latricia had this to say:

“Since that day my husband and I have been taking turns staying at the hospital a full 24 hours so that one of us is always with Vaughn and the other is with our 3 older children. We have a 60 mile drive to the hospital and gas was adding up quickly. We were so thankful to the CDH foundation for acknowledging the unexpected struggles of having your baby back in the hospital. The grant they were able to provide is going to take a huge burden off our family as my husband and I continue to care for all 4 of our children. There is so much hope and support available from the CDH foundation and I couldn’t be more grateful!”

Thank you so much Latricia for sharing Vaughn with us. He is such an amazing reminder that CDH babies are so strong and resilient! I am so thankful The CDH Foundation could help relieve some of the stress so that you could focus on what is most important, your family.

If you would like to help babies just like Vaughn not just survive but THRIVE in spite of CDH, please consider partnering with us! Check out: https://www.thecdhfoundation.org/5tothrive for more information.

Meet Emma...

On August 10th, 2022 at 11:09am Emma Rena Johnson made her grand entrance into the world. At 6lbs 15oz and 20 inches long she had Mommy (Heather Smith) and Daddy (Bryan Johnson) wrapped around her tiny finger.

At 4 days old Emma’s pulmonary hypertension was just too much for her heart to withstand so she was placed on ECMO. In the span of 6 weeks Emma battled pulmonary hypertension, internal bleeding, 3 surgeries, seizures and a stroke. She was called “one tough cookie” by her medical team and fought as hard as she could until CDH was just too much for sweet Emma’s body to handle. Emma courageously fought CDH for 6 weeks with her mommy, daddy and big brother loving, supporting and praying for her every step of the way. On September 21st, Emma lost her battle. She was 1 month and 11 days old.

Remembering Emma, Heather shared:

“Instead of going home and dressing my baby up just to take 1,000 pictures in cute outfits. Instead of putting big cute bows in her hair and playing dress up with her. Instead of painting her little nails and toes and just doing all the little girly things I had in mind since I found out she was a girl… I’m going home to plan a funeral. She went peacefully in my arms. My baby fought so hard and yet CDH was just too much for my little baby. I’m glad I got to share her story with you to bring awareness to this terrible diagnosis. Unfortunately God needed our baby more than we did. I just know for a fact that she had so many people waiting on her when she got there with open arms.”

Emma’s life may have been short but her impact will always be remembered. She lives on in the hearts and minds of those who loved her unconditionally.

Thank you Heather for sharing your beautiful daughter with us. Emma, you are so loved sweet girl!

Meet Clara...

Clara’s mom Stephanie had this to say:

My husband and I went to our 18 week anatomy scan so excited to see new ultrasound pictures of our baby girl, not knowing that our lives were about to change. After the ultrasound, my husband left to pick up our kids from school and I stayed and waited for the doctor to review our scan. We already had three healthy boys, so when the doctor came in the room and stated that our daughter had a very serious birth defect, I was in shock. I honestly don't remember anything the doctor told me that day. My head was spinning and my ears were ringing and I just could not understand what she was telling me. In the week that followed, we had more testing and imaging. We were told our daughter's left sided CDH was very severe. We were told she would likely not survive. We were told to abort. I have never cried so much in my entire life.

My husband soon found some CDH support groups on Facebook and we were able to connect with fellow families. The name Dr. David Kays came up again and again, but he was all the way in Florida. There's no way we were going to uproot our family and move to Florida. Then a CDH mom sent me a recorded presentation by Dr. Kays, describing why his program has such good outcomes. I was filled with so much HOPE! My husband and I watched it together and we knew that we would never forgive ourselves if we didn't give our baby girl the absolute best chance.

At 34 weeks pregnant, my husband moved me into the Ronald McDonald House in St. Petersburg, Florida and then he returned home to our boys. After several ultrasounds and a second MRI, we learned that our daughter was even more severe than we had thought. She had only 11% observed lung volume. Dr. Kays told us the safest thing to do would be to put our daughter, Clara, on ECMO immediately after birth.

At 37 weeks and 3 days, our sweet Clara Grace was born. She was whisked away and connected to ECMO within 15 minutes of birth. Dr. Kays repaired her diaphragm later that day. She was a very sick little girl. After 28 days and some big scares, she was able to come off ECMO. Clara struggled to come off the support of the ventilator. She was intubated for 73 days. Then she struggled to come off CPAP. After meeting with Dr. Kays, we decided to allow Clara the time to continue weaning from CPAP at home. Clara was discharged after 131 days in the hospital, and two weeks later we made the 22 hour drive back home to Wisconsin to join her brothers for the first time!

Clara is the sweetest, happiest baby. She adores her brothers and thinks everything they do is funny. She has come so, so far. She is now officially off CPAP and only on oxygen through nasal cannula! We are so proud of her and everything she has been through.

Clara gave us quite the scare recently when she was rushed to the hospital with difficulty breathing. She was diagnosed with RSV and pneumonia and was really struggling. On the third day of her admission, she took a turn for the worse. She was on the brink of being intubated when she finally was able to stabilize on bipap. Over the next three days she slowly improved enough to come home. During her six day hospital stay, I stayed with Clara and my husband took off work to be there for our boys. We were so grateful to receive the re-hospitalization grant from The CDH Foundation. I have been on a leave of absence from work since February 2022, so we are currently a one-income family of six. My husband has used all of his sick hours, so him taking off those days to care for our older children was an unexpected financial hit. The grant helped us pay for gas to and from the hospital, and food while I was away from home. We are so thankful to have such a strong community rallying behind us.

Meet Aleks...

Aleks was born on December 8th, 2020 at Johns Hopkins All Children’s Hospital in Florida. Within 23 minutes of his birth he was placed on ECMO. He would remain on ECMO for 23 days.

During this time he was diagnosed with semilobar holoprosencephaly, laryngomalacia and cerebral palsy. He spent 9 months at JHACH before being discharged.

Unfortunately his CDH story does not end there… Within one week of returning home to North Carolina Aleks was be re-hospitalized with infections that would nearly cost him his life. He remained hospitalized for 4 months. In July of this year Aleks was re-hospitalized again, this time with a bowel obstruction caused by scar tissue from his hernia repair. He would remain in the hospital battling this obstruction, surgery, a bacterial infection and feeding intolerance for more than 25 days. 

Thanks to the support of our generous donors we were able to provide Alek’s mom a re-hospitalization grant to help relieve some of the financial strain she was under. We are thankful to be able to help her get back to doing what is most important, caring and advocating for her beautiful boy.

Meet Sunnie...

March 18th - the day the world stopped…

At 32 weeks and 5 days into our pregnancy we were told, “There is something concerning on the ultrasound. We are going to refer you to a high risk doctor in Dallas. Her stomach is near her lungs and it shouldn’t be. It’s called congenital diaphragmatic hernia.” 

The following weeks consisted of twice weekly ultrasounds, MRI’s, bloodwork, meetings with specialists all to prepare us for what birth would look like and the care Sunnie would need. I grieved somewhere along the way… mourning the loss of being able to hold Sunnie, of not hearing her first cry. I mourned the loss of a joy filled pregnancy, replaced instead by worries and unknowns. 

We made the decision to stay at Medical City Dallas with Dr. Crombleholme which was only 2 hours away from our home. This would allow my husband, Derek and I to spend time with our 3.5 year old. I prepped my classroom for a substitute and packed bags, not entirely sure what to bring. 

The numbers looked good. She was moderate-severe but only had a 20% chance of ECMO and had good lung volume at 36% (based on prenatal scans). On April 25th we made the 2 hour drive into Medical City Dallas at 6pm. Dr. Crombleholme was ready, the team was ready with intubation supplies and crash carts… I wasn’t ready.

Sunnie Rose made her debut on April 26, 2022. I saw her for a brief moment and then she was off to fight for her life. I was wheeled to see her 2 hours later, sometime near midnight. She was perfect, stable. 48 hours into life Sunnie had many difficulties and it became clear her body simply could not fight this without help, her heart and lungs needed to rest. On April 29th at  2:05am, Sunnie was placed on extracorporeal membrane oxygenation (ECMO), the highest form of life support.

We thought things were finally calming down but at 5 days old, Sunnie’s doctor told us he was moving to a new clinic. I felt betrayed and hurt. I should have had a choice. Yet again, another choice was taken from me. We made the decision to stay in Dallas for this doctor. After a lot of discussions we made the decision to transfer Sunnie to Johns Hopkins All Children’s Hospital in Florida. On Friday, May 5th - 9 days of life, 7 days on ECMO, Dr. David Kays flew from St. Petersburg, Florida with his ECMO team to pick up Sunnie and bring her to their CDH unit. 

Sunnie flew with a full plane of medical staff, Derek began the 20 hour drive, and I, still healing from birth and hemorrhaging, headed to the airport to catch my flight to Florida. Once we were settled, she was scheduled for repair surgery. In hindsight, things went relatively smoothly after her repair. She was weaning off ECMO, coming off sedation meds… although there were MANY hiccups along the way, including a brain bleed. Sunnie was extubated on day 31 and at 33 days old I was finally able to hold my baby! She was stable and I finally felt like I could breathe. 

Derek returned home to help be with our son while I stayed by Sunnie’s side, pushing myself to pump and feed her around the clock. With little improvement and reflux causing spit up and slow weight gain, she was scheduled for a nissen fundoplication and g-tube surgery. FINALLY! A light at the end of the tunnel. We got ready for discharge!! July 11, 2022, after 75 days in the hospital (9 in Dallas, 66 in Florida), we were DISCHARGED!!

Life at home was beyond words. We were so glad to be all together as a family of 4! Dawson loves his sister more than anything and she adores him! But, after being home for 8 weeks, RSV reared its ugly head. Sunnie was re-hospitalized and diagnosed with pneumonia, RSV, and rhinovirus. The trifecta. She was placed on high flow oxygen and seemed stable but after the first night she took a turn for the worse and went into respiratory distress. The chaplain held me as Sunnie was bagged and sedated, a team of 20 people surrounding us. I will never forget the look on her face as she tried to get air into her little lungs.

Thankfully, she began to slowly improve and after a week we were discharged with oxygen. We were so blessed during that time by The CDH Foundation, who offers grants during re-hospitalization! Being 3 hours from home, without a car, I relied on hospital meals and Door Dash. The support from groups like The CDH Foundation and Tiny Hero not only helped financially but emotionally, as I felt surrounded by people who not only understood but who stood with our family. We were also surrounded by so many people at home with donations, meals for our family, our families taking care of Dawson, we are loved deeply!

Thank you will never be enough to everyone involved in caring for Sunnie and our family during these last 6 months. The CDH fight continues.

#SunnieStrong #thecdhfoundation

Did you know?

Did you know?

By: Casey Witt

Stem cells are cells from which all other cells functioning in the body are generated. Through a process called differentiation, stem cells can divide to specialized cells such as blood cells, brain cells, heart muscle cells or bone cells. No other cell in the body has the natural ability to do this.

Stem cells isolated from human placenta (umbilical cord blood and tissue), which are often discarded after pregnancy, are particularly promising due to their ease of collection and ability to differentiate into different types of tissue. Stem cells hold great promise in research and have the potential to treat a wide variety of conditions.  The potential therapeutic role of stem cells derived from the placenta have been studied for wound healing, heart disease, autoimmune disorders, and chronic lung or liver injury. Surgical intervention on a fetus still in the womb for structural birth defects, such as spina bifida, has rapidly progressed as a field due to advances in maternal-fetal medicine and improving surgical techniques. Though much work still needs to be done, placental stem cells are a promising therapeutic agent for fetal intervention for congenital disease.

Did you know?

As the parent of a CDH baby, you can collect and bank your baby’s stem cells from the umbilical cord blood at no cost, no matter where you deliver?  

If you are interested, contact Eliza Stroh, Genetic Counselor and Cord Blood Clinical Specialist at elizastroh@generate.com

References:

https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/in-depth/stem-cells/art-20048117

https://www.cordblood.com/

https://www.cirm.ca.gov/about-cirm/publications/potential-clinical-applications-placental-stem-cells-use-fetal-therapy-birth

https://www.generate.com/

Wyatt: Hardy, Brave, and Strong

“This is Wyatt’s story and I will continue to tell it every single chance I get because he deserves that. In his short little life he impacted so many people. The successful placement and outcome of the shunt changed the mind of an MFM that had previously told us that the procedure was a ”heroic measure.” After Wyatt, she now performs these shunt placements herself.”

— Niki Ritchie

By definition Wyatt means “hardy, brave, and strong” and that is exactly what he was. My son was a fighter and I will spend the rest of my days fighting for him.

We received our CDH diagnosis on July 2, 2018. To say we were shocked was an understatement, we were blindsided. Not two weeks before, we had completed our anatomy scan and saw two picture perfect babies. We were only sent to an MFM because Fiona (baby B) was measuring on the small side and they wanted to ensure her cord flow was appropriate.  Josh and I drove to that appointment in separate cars intending to go to work afterwards because we weren't really worried. I remember the ultrasound tech spending an unusually long time on Wyatt which was annoying, because we were there for Fiona. When she returned with the physician he did his own scan. As he was scanning I was watching the screen and what happened next will forever be etched in my mind. He said "Baby B is fine, but Baby A..." I then finished his sentence for him "has a diaphragmatic hernia." For the first time in my life my medical knowledge wasn't power it was a disadvantage. I knew the risks. I knew that 50% of children with CDH did not make it. I also knew this was MY son, not a statistic and we weren't going down without a fight.

The next month was  whirlwind as Wyatt's prognosis went from bad to worse and as his issues began to impact my health. We took a leap of faith after meeting an amazing surgeon, Dr. Daryl Cass from Cleveland Clinic.  I call him our mad scientist. He believed in us, in Wyatt and in Fiona. On July 31, 2018 we literally packed up and moved across the country not knowing what lay before us. Josh and I knew we would do anything and everything to save our son no matter what price we had to pay. Nothing else mattered except giving Wyatt the best possible chance at survival. The next 2 days were a blur of meeting with new doctors, an echo, and MRI. Finally, Dr. Cass told us. "I've seen this before and I think we can do this. I'm willing to give it a shot if you guys are." I just remember breaking down and crying tears of happiness and hope. He had a chance.  You see, Wyatt's CDH was right-sided causing his liver to migrate into his chest which resulted in his liver being kinked off causing a pleural effusion (Fluid in his chest). We later learned that it was actually a chylothorax meaning the fluid in his chest was actually full of lymph (Dr. Cass had actually hypothesized this prior to ever meeting us, just by my explanation on the phone). The extra fluid in his chest and abdomen, as well as his facial edema earned us the diagnosis of Hydrops Fetalis or Fetal Hydrops. Therefore our immediate mission became removing this fluid. A thoracentesis (this involved a needle being inserted through my uterus, into Wyatt's chest to draw off fluid), trip to Michigan, and interuterine shunt placement into Wyatt's chest later, we were on the road to recovery. My baby boy looked AMAZING. The previously swollen face (which was always beautiful to me ) was now the perfectly formed, miniature image of my dad. He looked just like his Paw Paw. We were on a high, I was ready to spend the rest of my pregnancy like a chicken waiting on her eggs to hatch! We knew we still had a fight on our hands with the actual CDH repair, but for now we had been victorious. Our determination and stubbornness had paid off.

Two days later on August 12, 2018 at 6:00 am my water broke at 28 weeks and 5 days. In that moment, standing in our room at Ronald McDonald with amniotic fluid pouring down my legs, I knew. I knew that we had come so far only to lose in the last inning. I knew that I had ONE job now-get Wyatt and Fiona here safely and love him for as long as I had with him. I needed to hold him, sing to him, and tell him that his momma loved him more than life itself. I NEEDED him to know that. 17 hours later after a scary labor, placental abruption, bleeding, and an emergency C-section Wyatt Hayes Ritchie was born at 10:58 and Fiona Scarlett Ritchie at 10:59pm. I remember BEGGING the doctor not to put me under general because I was so afraid he would die before I woke up and I would never meet my son. With a CDH diagnosis they prepare you that your child will not cry at birth so I didn't expect to hear a thing, but I was given one tiny squeak as they lifted him out. It is a sound that I will remember for the rest of my life.

On the morning of August 14, 2018, Josh and I held our sweet baby boy and sang to him as he went to heaven.  I was granted the greatest gift, I was able to hold my twins together for the first and last time and I will never forget how I felt in that moment.

For the next 2 months we lived in Cleveland, Ohio as our survivor thrived in the most amazing NICU in the entire world (if you ask me). We grieved our son every second of every day as we prayed for the health of his sister. On October 15 we were able to bring Fiona home and begin our lives, our "new normal" without Wyatt.

This is Wyatt's story and I will continue to tell it every single chance I get because he deserves that. In his short little life he impacted so many people. The successful placement and outcome of the shunt changed the mind of an MFM that had previously told us that the procedure was a "heroic measure." After Wyatt, she now performs these shunt placements herself!

Here are the things you need to know about CDH:

1. It is not rare, It happens in 1 in 2500 births. This is about the same as Cystic Fibrosis.

2. It is not a death sentence-research will tell you that the survival rate is 50%, but there are doctors in the U.S. who have up to a 90% success rate with the use of tools like ECMO.

3. These children can and have lived "normal," successful lives.

Here are the things I want you to learn from Wyatt:

1. Don't give up. These kids ( or any child with a similar diagnosis) are fighters. I always talked to my belly and told Wyatt "Buddy, as long as you keep fighting, I will keep fighting for you."

2. Do your research. Physicians don't know everything and it is OKAY to get a second opinion. As I stated earlier, there are CDH surgeons with a 90% survival rate.

3. Take the phrase "heroic measure" with a grain of salt. Don't let anyone tell you there isn't any option. If we had taken the first physicians advice "to just let him die," I would have never held my son, I would have never kissed the top of his perfect little strawberry blonde head. Dr. Cass gave us that chance and for that I will always be grateful.

Scarlett...Our Miracle Unicorn

“This was our fourth hospitalization (and second unexpected hospitalization in three months), so we were depleted of resources between time away from work, unexpected travel, and mounting medical expenses. We were unable to get into the Ronald McDonald House due to a lengthy waitlist, so friends and members of the CDH community pulled together for us. Sensigreen mailed us a care package, which included a gift card for a night’s stay at a local hotel. This support was so impactful to us, not only because it provided us with a resource that we needed, but because we could feel the love and support from afar. ”

— Ashley Beatty-Smith

Scarlett’s CDH story began on October 27, 2017 at her 18-week scan when we learned that she was diagnosed with a severe left-sided Congenital Diaphragmatic Hernia, with her heart displaced to the right side of her chest. She would later also receive a diagnosis for a heart defect known as a hypoplastic aortic arch with mitral valve stenosis. After receiving the CDH diagnosis, we were advised to consider termination, so we left the appointment with little hope or direction. What started as a joyous day ended in devastation and confusion.

After connecting with fellow CDH parents in an online support group, we chose to relocate to Johns Hopkins All Children’s Hospital in St. Petersburg, Florida from Ohio to receive care from Dr. Kays and his CDH team. During consultation, he predicted that even with a severe case and a suspected heart defect, she’d have a 90-95% chance of survival under his care (significantly higher than the odds given to us at home).

Scarlett was born in March 2018, leading us on a journey even more challenging than we expected. During repair surgery we learned that she had only 20% lung volume with 30% liver, stomach, spleen, and bowel in her chest. She underwent the repair while on ECMO, where she remained for 14 days.

The remainder of our 99-day inpatient stay came with additional unexpected challenges, but unbeknownst to us, the biggest challenges would be faced after discharge. Upon returning home, we learned that Scarlett would require open-heart surgery to reconstruct her aortic arch. She underwent circulatory arrest on cardiopulmonary bypass and her arch was doubled in width with donor tissue. Surgery was a success, and we were on the road to recovery. 6 weeks later, we returned to JHACH for follow up, and we were disappointed to learn that Scarlett had a recurrent diaphragmatic hernia. Her kidney had migrated into her chest through an opening in her diaphragm. This was a result of challenges we faced during a previous operation. We canceled our flights home and remained in Florida for hernia repair.

After a successful surgery, we returned home to Ohio again. 12 weeks after returning home, Scarlett experienced acute symptoms related to a bowel obstruction. She was rushed to the hospital, and then transported to another hospital three hours from our home. The following day she was taken into emergency surgery to repair the obstruction. This was our fourth hospitalization (and second unexpected hospitalization in three months), so we were depleted of resources between time away from work, unexpected travel, and mounting medical expenses. We were unable to get into the Ronald McDonald House due to a lengthy waitlist, so friends and members of the CDH community pulled together for us. Sensigreen mailed us a care package, which included a gift card for a night’s stay at a local hotel. This support was so impactful to us, not only because it provided us with a resource that we needed, but because we could feel the love and support from afar.

Organizations like Sensigreen CDH Foundation provide families with a supportive community and with access to factual information to assist them in making treatment decisions. It is through these connections that families can learn about expert physicians. It also a space to meet others who are walking the same journey. And when the journey is feeling particularly dark and scary, like ours was during unexpected hospitalizations, receiving support in a variety of capacities (whether it be financial, emotional, or otherwise), is deeply impactful. We realized that despite those dark days, we have never felt alone.

Scarlett’s story is long and filled with challenge, but I want to emphasize that it is a positive story of HOPE! With expert care, she has come through each of these challenges stronger than before. We are living out the experiences we were thought were stripped away from us on diagnosis day. We’ve learned that this diagnosis can be conquered and that you can still find joy and happiness. If you are facing a CDH diagnosis, please hold onto this hope and know that you are not alone.

Fed is Beast....Especially for Children (and mamas) with Medical Complexities

“One thing I’m asked a lot is why Kenna is so small and what oral aversions have to do with a diaphragm that didn’t fully form. When Makenna was born she wasn’t given immediate skin to skin, in fact she wasn’t held at all for 28 days. Her mouth was full of tubes (one to breathe and one for suctioning) so she wasn’t allowed to breastfeed or take a bottle. She didn’t find comfort in mouthing things the way babies normally do and instead had numerous negative experiences associated with things going in her mouth.”

— Olivia Bailey Cason

So many people think when they hear "hernia" that once repair surgery is done a child born with CDH is "fixed." In this post CDH mom, Olivia Bailey Cason, gives information on her child's oral aversion caused by the cascading interventions that save the lives of newborns with CDH. These interventions are an ABSOLUTE necessity, but lead to unintended consequences like a child needing a feeding tube until they can learn to eat effectively or therapies to teach them to eat effectively. Thank you Olivia, for educating our audience!

One thing I’m asked a lot is why Kenna is so small and what oral aversions have to do with a diaphragm that didn’t fully form. When Makenna was born she wasn’t given immediate skin to skin, in fact she wasn’t held at all for 28 days. Her mouth was full of tubes (one to breathe and one for suctioning) so she wasn’t allowed to breastfeed or take a bottle. She didn’t find comfort in mouthing things the way babies normally do and instead had numerous negative experiences associated with things going in her mouth. All of her nutrition was given first through her veins (TPN) and then later through a tube in her nose, so she didn’t even experience positive experiences through food. As a result when she finally was able to eat, she didn’t want to. She didn’t trust us to put anything in her mouth. She wouldn’t take a bottle or a pacifier and wouldn’t let us brush her teeth or spoon feed her. Thankfully at a little over 30 days old Makenna attempted to nurse for the first time and succeeded, but it wasn’t easy for her. Her little lungs worked so hard to eat that she would fall asleep after 3-4 minutes every time. Then she’d wake up 20-30 minutes later wanting to eat again, only to fall asleep almost immediately. She didn’t need a gtube at first and by the time we knew she did, she couldn’t have one because she had developed hydrocephalus and the risk of the tube getting infected and the infection going to her brain was too high. This happened 24 hours a day for 21 months straight. For 21 months she wouldn’t take a bottle or a sippy cup, so for 21 months I was the only one who could feed her and she never ate enough to sustain herself away from me for more than an hour. She also never slept more than 30 minutes at a time...which means neither did I. It was rough.

At the same time all of this was going on we also discovered that Kenna had allergies. Not just to dairy and soy like many kids, but also to wheat, corn, eggs, apples, carrots, and a few other things. We were forced to remove all of these from her diet and as such she was limited in the foods that she could eat (nothing processed). Fruit and many other foods also made her reflux worse and between food hurting her gut, allergies, and her oral aversions she started to refuse to eat. She then developed sensory issues to foods because she didn’t have experiences with them and started rejecting things based on their textures and the way they felt, smelled, or looked.

People go on paleo to lose weight and we were forced to use it with Kenna and myself due to her allergies to corn, dairy, soy, and wheat (because she nursed I couldn’t eat them either and switching to formula wasn’t an option because she wouldn’t take a bottle due to the oral aversions).

All that to say...it’s been a journey and it’s still something she struggles with. It drives me crazy when I hear the breast vs bottle argument. It is so ridiculous. Be glad your baby eats and you have the ability to feed them. Be glad they gain weight and they eat enough to grow, sleep, and thrive. Fed is best...however that happens and whatever that looks like...don’t feel guilty for feeding your baby. Don’t let others judge decisions they don’t understand. I’m sure people see me allowing Kenna to eat whatever she wants, whenever she wants, and they judge my decision. I’m sure they don’t understand why we would give her medicine to stimulate an appetite or why we obsess over her weight. But until you’ve been in our shoes and walked this walk, you can’t understand how hard we work for every one of those 33 pounds that make up our miracle!

Harrison...our little turtle

Rachel Nowlin Jones shared this with us last summer as we were seeking grant funding for a program to reach maternal fetal medicine specialists in Alabama. As we move through April, I wanted to share it again.

Our CDH diagnosis came the Friday before Thanksgiving 2017. After the news was delivered, my MFM’s voice just became white noise and my mind took over. What I do recall (to paraphrase) was, “This is about the toughest diagnosis a parent can receive” and, “I have to offer you the option of termination.” We knew that termination was not an option for us, so after digesting the news for about a week I asked my MFM, “What now?” She told me that we would have to travel around the country to the handful of children’s hospitals that treat CDH babies and interview doctors until we found one that we were comfortable with. She gave us a list of about 5 hospitals that she’d recommend and from there we were on our own.

We took her advice, researched hospitals and booked a flight to Philadelphia to visit another MFM at the Children’s Hospital of Philadelphia. While there we discovered the severity of Harrison’s hernia. He had 20% of his liver in his chest. We were also given the news that he had a 90% chance of needing ECMO after birth and that his chance of survival was 50%. At that time termination was once again put on the table. After we nixed that, we then received the hardest blow yet about predictions of his quality of life if he was to survive. We discussed a feeding tube, possible trach, 6 month NICU stay, surgeries, developmental delays, and possible brain bleed. She gave us a folder with some information about CDH and about five business cards of doctors who would be part of Harrison’s care if we chose to deliver there. The folder also had a brochure on palliative care.

Once again, we felt absolutely deflated. This information was overwhelming and I couldn’t believe that we’d traveled across the country for this news. They were supposed to be one of the best according to my MFM at home. They were supposed to help my baby and me. The more my husband and I read the folder’s information the more we started to lean toward palliative care. I started to prepare myself to deliver a baby that I would never get to bring home.

I felt very alone during this time and decided to reach out to a CDH support group online for some advice. This decision proved to change our entire story. Parents from all over the country contacted me with advice and stories of their own. They connected me with several foundations, one of which is the Sensigreen CDH Foundation. I finally spoke to the parents of survivors. I saw pictures of beautiful children whose initial diagnoses were actually worse than Harrison’s. Now a little hope crept into our world of despair. And, the hope continued to grow when we became connected with a doctor who gave my son a 95% chance of survival with an excellent quality of life.

I’m happy to report that that doctor was spot on. Harrison is living at home and continuing to recover and progress. We are grateful now for the path that brought Harrison into our family. However, I see the vast need for education among MFMs regarding CDH. It once was a grim diagnosis, but hope exists. However, parents should not have to travel around the country searching for it. If our MFM had connected us with the Sensigreen CDH Foundation on day one, then we could have focused on celebrating my pregnancy and Harrison’s life instead of trying to prepare ourselves for his funeral. Providing hope and resources to newly diagnosed parents can alter their CDH journey for the better. The CDH community is an amazing network of support, and MFMs should be better connected with the resources available to their patients.

Harrison is 13 months old and is doing well, but still faces challenges. As you read these stories, please consider becoming a $5 to Thrive Donor or buying a "ticket" to our No-Show Mother's Day Tea!

http://weblink.donorperfect.com/2019NoShowTea

http://weblink.donorperfect.com/fivetothrive