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.
