Max's Story - Congenital Diaphragmatic Hernia (CDH)
I have a history of miscarriages. Three before my daughter, and one before Max. So we take each pregnancy day by day. We get excited, but try not to get too excited. We made it past the 12 week mark (which is when we found out about our first miscarriage), and around 14 weeks, we found out we were having a boy. I had a subchorionic hemorrhage that they were monitoring so we were able to see the gender a little early. I started to feel pretty good about things when we made it past 20 weeks. I had gestational diabetes with my daughter, so I was dreading taking the test. They didn’t test me until 28 weeks, and I passed! Wow, things were actually going well, and I felt like I was in the clear! That is until a routine ultrasound at 32 weeks.
I remember my husband had that week off, and he was able to come to the appointment with me. I’m so glad he was there. When we went back to get my ultrasound, there was the ultrasound tech and a student with her. After the technician checked everything out, she let the student look around. The technician told the student, “I’ll be right back, I need to talk to the doctor about something.” My heart sank. I looked at my husband, who was trying to keep our 2 ½ year old daughter entertained. He obviously didn't hear her. After the ultrasound, we had to go to separate rooms...my husband in the main lobby and me in the second waiting lobby. I immediately texted him what I heard and told him I was worried. He told me not to worry and that it’ll be fine. I ended up having to wait in that lobby for 45 minutes. Wondering and worrying. When they finally called us back (my husband met up with me), the doctor came in and told us that our baby boy had Congenital Diaphragmatic Hernia and told us a brief description (his stomach was pushed up) and how he would need surgery and need to see a specialist in Atlanta and this and that. I just looked at her blankly, in shock I think. She walked out for a minute, and I started to cry. I’m so thankful my husband was there. I had no idea what some of the words meant, and he’s an anesthetist so he broke it down some for me, even though I don’t think he had ever heard of CDH before. My doctor got us set up with a specialist in Atlanta for the next day, which is about 4 hours away.
When we finally came home from the ultrasound appointment, 3 hours later, we both kind of went in to separate rooms. We needed to process it all and try our hardest not to look up things on google...but you know we did. We told our families and started to get ready to make the trip to Atlanta the next day. We had family in the area and were actually planning on visiting them that week anyway.
When we met with the specialist, he just confirmed that he had CDH, and at the time, his stomach and some of his small intestines were pushed up. He had given us an “ok” range for his lungs. He seemed a little surprised that we had just found out about it all the day before. We stayed in Atlanta for a couple days with family, taking the kids to the zoo and aquarium. It kept me busy, but I would still breakdown every now and then. We hadn’t pick out a name yet, but on the ride home in my mind I had decided on the name Max. It was on our name list, but at the bottom for me. It just kept popping in to mind the whole trip, and I just knew it was the name.
The following weeks were crazy and a roller coaster of emotions. Two-three appointments a week with ultrasounds, NST’s, Skype meetings with the doctors and a couple more trips to Atlanta. One trip we met with the surgeon, cardiologist, and took a tour of the hospital and NICU.
I originally was going to be induced at 38 weeks because my daughter came 2 weeks early on her own, and they didn’t want me to be 4 hours away if Max decided to come early. So, when I was around 37 weeks, my daughter and I went to stay with my sister-in-law for the long haul. My husband had to stay at home for work. The doctors decided to wait on inducing me until 39 weeks, and that extra week was torture. Being away from home, not knowing when or if I’d go into labor and my husband being 4 hours away, and what if I did go into labor and he wasn’t there for the birth?? I had also followed a family on social media whose baby had CDH, and their sweet baby boy didn’t make it. I was scared and anxious and the days felt like weeks. I just really wanted him to be born and get things going.
On May 11, 2017 Max Henry was born. I got to see him for a few seconds before the NICU team started to intubate him and get him all set up. My husband followed him in to the NICU and sent me pictures and updates. There were more organs in his chest cavity than they thought but he was stable. They wheeled him in my room so I could see him before transporting him to the Children's Hospital. My husband followed him there, and after a while my family left to go back to their hotel (it was very late by now). I had just had a baby, but there was no baby to hold, feed, change, and love on. Luckily, I was able to be discharged just under 24 hours so that I could go see him.
He was a fighter, they kept telling us! Giving the nurses a hard time, pulling out his wires and tubes. Honestly, the following days were a bit of a blur. It was back and forth from the Ronald McDonald House, taking turns visiting with him and family visits. My daughter wasn’t old enough to go into the NICU with us, so we had to have someone watch her or we had to take turns. He never needed ECMO and was fairly stable. The doctor likes to wait a few days to see how he would do, saying that often times right after being born the baby has a bit of a “honeymoon” period, and then after a few days, sometimes doesn’t do as well. He didn’t want to do the surgery too soon. He was set to have his repair surgery one day, but got bumped because of another emergency. I was pretty upset, but I was also thankful that he wasn’t considered an emergency and could wait another day. So, the next morning, a week after he was born, he had his repair surgery.
He was in surgery for 4 hours. The longest 4 hours ever! They would call every 30 minutes to an hour from the OR to let us know how everything was going. They tried to do it laparoscopically, but the defect was too large so they had to make an open incision. Finally, when he was all done, they called us back. The doctor looked so serious when he walked in. I immediately got worried. But he told us how well Max did! He said that his stomach, liver, small intestines, and spleen were pushed up in his chest cavity.
Each day after his surgery, Max seemed to be getting better and better. He would have a couple minor setbacks or bad days, but the nurses would always comment on how well he was doing and how he acted like he was never sick. Ten days after being born, I was finally able to hold my baby. It may not have been how I imagined, with all the wires and tubes, but I didn’t care.
The following couple weeks were tough on me. My husband had to go back home to work. They were long, lonely days in and out of the NICU. I would walk to and from the hospital and the Ronald McDonald House each day and they were actually my saving grace...those walks. Fresh air, and sometimes I would just cry. Max seemed to be doing well and I just wanted to take him home already! There was still some feeding issues and issues with keeping his weight up.
After twenty-eight days in the hospital, we were able to go home. I know that stay seems so short compared to some, but I am so thankful how amazingly well he did and continues to do! Max will be 2 years old next month and has never had any other health issues. His first year he had follow ups with x-rays every 3 months, and they all looked good. Looking at him you would have never known the kind of beginning he had. We are forever grateful for the doctors and nurses and family that walked through this tough time with us. The constant prayer, support, and love sent to us from all over the world.
Thank you, Tiny Hero, for providing this space and support for parents walking through this CDH journey. Every story is different, but we all are walking through this together.