I found out about Samuel’s pregnancy after I had experienced three losses before him. I had an older son and we had been trying to have another baby and had a miscarriage, ectopic pregnancy, then another miscarriage before finding out about Samuel. It was actually during my ectopic pregnancy that I decided my next son would be named Samuel. It means “The Lord Hears.”
I thought once we got to 12 weeks with Samuel that everything would be “normal” from then on. At an anatomy ultrasound scan at 14 weeks, we found out he had Congenital Diaphragmatic Hernia (CDH). I was a medical student at the time and remembered a specific slide in a presentation on CDH in one of my classes and knew it hindered lung development, but that was the extend of my knowledge about it. I do not think that his diagnosis really sunk in until 2 weeks later when we met with the Maternal Fetal Medicine doctor to discuss his condition.
From the beginning I was told CDH had a very poor prognosis. I was told 50% overall if you include babies who do not make it to delivery. If they do make it to delivery, then survival rate increases to a 70% chance. I hoped and prayed that Samuel would get to stay here with us. We were told babies with CDH would be intubated right after delivery, and that most would have a long NICU stay. The most severe cases would end up needing an ECMO machine. I hoped he would not be one of these cases.
On most of Samuel’s ultrasounds when I was pregnant, he grew very well and his lung tissue seemed to be growing well too. We thought based on his images that he would not be that severe of a case.
After Samuel was born, I held him for around 15 seconds or so while they cut his cord, then he was immediately taken to the next room to be intubated. Once he had his ventilator set up, they brought him by me to say goodbye before he went to the NICU. It was difficult for me to not be able to be with him that first night as I was recovering from giving birth and could not be taken to see him right away. It would be another 17 days before I got to hold him again. I felt like I wished I could have just kept him safe in my belly forever.
After he was born, we found out he was missing the whole left side of his diaphragm and he was much more severe than we had anticipated. He ended up being put on an ECMO machine at day 1 of life and had his repair surgery day 2.
He was the sickest baby at Children’s Mercy NICU in Kansas City for those first few weeks of his life. For a period of time, I began to lose hope that he was ever going to improve. Then all of the sudden around 4 weeks old he started doing better. He was able to be taken off of ECMO and extubated. Some days were long, there were so many ups and downs, but I was reminded it was a marathon and not a sprint. He ended up coming home at exactly 3 months old, which was half of the amount of time they expected based on how sick he was after birth. He is truly a miracle baby.
Samuel’s diagnosis made it hard to take him places for the first year of his life. His breathing difficulty made it to where he could not tolerate stress, heat, or any illness so we could not take him out much. He came home on tube feeds and also had an oral aversion so that is something we also had to work through.
Getting to witness Samuel’s life firsthand has been one of my greatest joys. I look at the face of a miracle every day and am thankful beyond measure that he is still here, and I am able to see him grow and learn. He gave me a new perspective on life. Every day is a gift.
Samuel is home with his family and doing amazing considering everything he has been through. He eats almost every type of food and has developed quite a sweet and rascally personality. He is around 3 months delayed in his motor skills but is catching up every day.
I hope that Samuel can understand more about his condition someday and appreciate how lucky he is to be here. I hope he keeps his zest for life and that someday we can advocate for CDH together and help other families facing the same diagnosis.
Having On Angels’ Wings take photos of Samuel in the NICU was such a gift. I treasure these photos of his NICU days more than anything. It was so wonderful to have these taken free of charge during such a hectic time in our lives. We hardly had time to feed and take care of ourselves, let alone have time to think about things such as pictures. I would highly recommend you sign up to have the pictures taken! They will mean so much to you for years to come. The work OAW does is so special and it truly was one of the most meaningful things we had done for us while Samuel was in the NICU. I am so glad that we have these to look back on forever. Thank you so much OAW!
