Hayden’s Story - Congenital Diaphragmatic Hernia (CDH)

Our story is a long one, and it was one heck of a ride...

Long story short, when I was 16 weeks pregnant, we received abnormal results from a quad screen, leading to a level 2 ultrasound. That ultrasound occurred at 19 weeks, and they saw that our baby's heart was shifted in his chest but weren't sure why. Before we left, I completed a non-invasive prenatal blood test and expected to wait 10-14 days for results.

The next day, I got a call from the doctor at the hospital. She wanted me to come in for another ultrasound. That is when she found the Congenital Diaphragmatic Hernia (CDH). It was right-sided and his liver was up in his chest. We didn't really understand what she was saying, but she said that the diagnosis had a "guarded prognosis." She referred us to a maternal-fetal medicine clinic in Minneapolis to look at our case and get more information. She was very clear that if anything else genetically was wrong with our baby, the chance of survival was even less.

We were able to get an appointment in Minneapolis about a week and a half later. During that time, we received the results back from the blood test. It showed trisomy 7. This was just in time for our appointment in Minneapolis, which turned out worse than I imagined. After the ultrasound, the doctor brought us to an office and told us that because of the trisomy 7 result and that he really could not see the baby's right lung at all, he anticipated that our baby had a minimal chance at survival. In fact, a single-digit chance. The ride home from there was a quiet one. Jeff was the one to tell all of our family that night with individual phone calls.

The next few weeks were a blur. After the options given to us and the grim prognosis, we planned to deliver our baby and focus on comfort. Just to be sure that we were choosing the right path, we completed an amniocentesis to confirm the trisomy 7 diagnosis. The results started trickling in from all the tests they completed and, to our surprise, everything came out "normal." The conversation with the doctors changed at that point. It changed from focusing on comfort to focusing on helping our baby survive. Just when we thought we finally caught a break, we found out that I was now at risk for preterm labor with a lot of fluid accumulation and was starting to dilate at 24-25 weeks pregnant.

 I started on progesterone, which did not seem to help. I was also given betamethasone shots to help give our baby a boost in lung development. At just shy of 27 weeks, I was dilated about 3 to 4 centimeters. I was sent to the hospital in Minneapolis immediately to be admitted. I started on magnesium and indomethacin to try to slow things down. They ended up doing an amnioreduction the day after I was admitted and removed 3 liters of fluid. This seemed to slow things down a bit, but the conversations with the doctors at that point were that if our baby did come sooner rather than later, chances of survival were pretty slim. 

I was admitted for a week and since things had mellowed out, I was discharged. At this point, I had been having contractions, but nothing consistent until that evening. My contractions started occurring five minutes apart consistently. I decided it was time to go back to the hospital. We arrived at 8 pm and they did what they could to try to slow things down and stop our baby from being born but, at that point, it was too late. Hayden was born at 10:17 pm that evening at 28 weeks and 2 days. I was able to hold him for just a brief moment before they took him and began their work. They were able to wheel my bed over to him, so I could touch his head and get some pictures with him and Jeff. I can't look at those pictures today as he was completely blue from lack of oxygen. 

I had to get cleaned up and recover back in our hospital room, not knowing how our little guy was doing. Eventually, Jeff came back to the room and said they were able to intubate and that Hayden was stable. He also said he weighed in at 4 pounds 4 ounces, very large for his gestational age, which probably ended up saving his life.

I did not sleep much that night - I could not believe our baby was fighting. The next few days, we were told he was considered "very sick" and things could turn at any time. A few days after his birth, we met with genetics so Jeff and I could get blood drawn to compare to Hayden's to see if there was indeed anything genetically going on. It came back that he actually has an overgrowth syndrome called Simpson Golabi Behmel. It comes down to that he will grow at a faster rate and be at higher risk of developing certain kinds of cancers in the first few years of life. There could be other things associated with this syndrome, but those are currently the most prominent in our lives.

He seemed to be improving day by day and initially they were talking about repair surgery during the second or third week of life, but his oxygen saturation began decreasing on day 10. We found out that evening that he had a blood infection and we weren't sure how that night would turn out. Jeff ended up staying with him while I went to get some rest. He came back to our room a couple of hours later and said they had gotten Hayden stabilized. I couldn't believe it.

The next day was quiet and they let Hayden rest from the eventful day before. That evening, they decided to do a chest x-ray and things were looking really cloudy, but they weren't sure why. The respiratory therapist came into our room and decided to suction out his breathing tube. When she pulled it out, I knew something was wrong instantly. There was blood. We found out he had a pulmonary hemorrhage in his good lung, hence the cloudiness. Jeff and I stood out in the hall looking on. I couldn't even tell you what happened that night after that. Jeff held onto me - all I remember was the feeling of hopelessness and defeat. How would he make it through this on top of the blood infection?

Somehow, our little man pulled through. It took 2 weeks to finally get a negative blood culture showing he was cleared of his infection. Surgery had us wait until he had been on antibiotics for 5 weeks before they would complete his repair surgery. We met with the surgeon a couple of weeks before surgery and he had been shocked by how well Hayden was doing. Clinically, he had been doing so well that they thought that the hole in his diaphragm was perhaps not as large as they thought, but there was no way of knowing until he had his surgery. On day 45 of life, he finally got his CDH repaired and he rocked it! They told us that the hole was actually really big. In fact, he had about 10% of his diaphragm intact on the right side. We were told to expect him to get worse in recovery: the potential to need more oxygen support again and go back on meds, maybe even go on ECMO if it got really bad. BUT…. He didn't need any of it and was back to where he started with oxygen support very quickly after surgery!

It took some time to get him weaned off of his sedation meds and progress to a good spot with his feedings. He also showed some muscle tone issues, which is something we are still working on with PT but luckily we have seen some improvements. It took 157 days, but our little man finally got to come home and we were able to be a family of 4.

We still can't believe Hayden is doing as well as he is today. He has oxygen support at a quarter-liter and does have a G-tube, but it seems pretty minor compared to what they were expecting for our little guy. He is both a miracle and a blessing! We thank God every day that he proved everyone wrong.