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Wyatt: Hardy, Brave, and Strong

April 19, 2019 by Amy Wadsworth Register
“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.

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April 19, 2019 /Amy Wadsworth Register
cdh awareness, cdh, cdhalabama, alabama
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Scarlett...Our Miracle Unicorn

April 11, 2019 by Amy Wadsworth Register
“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.

April 11, 2019 /Amy Wadsworth Register
cdh, cdh awareness, cdhalabama, onemonthmanystories, unicorn, Dr. Kays, Kays Kid

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