Harrison...our little turtle
“ 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. ”
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!
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