Carsten’s Story - Congenital Diaphragmatic Hernia (CDH)
I was at my 14-week scan, which was to look for early detected anomalies. The funny thing is I opted out of this and genetic testing with our firstborn because, as my midwife said, "no history in the family for anything...no need to!" But when it was offered to me for our second baby just nine months after my daughter was born, I thought it would be fun because we could see the baby early and maybe find out the gender extra early!
I joked with the ultrasound technician that I just wanted some extra pics of the baby and how my daughter was healthy as can be. Then she left the room for what felt the longest time. I thought maybe my midwife was just busy because their office got pretty packed. Then, she came in with a very worried look on her face. She said, "the stomach was higher up than it should be" and that it could have a correlation to Trisomy 18, but they had no further information until I saw the high-risk MFM in 2 weeks.
That night I posted in a local mom's Facebook group asking if anyone has ever had a similar ultrasound and what it meant? I received a message from a mom who claimed to be an ultrasound technician for 15 years. She said what I described sounded like Congenital Diaphragmatic Hernia, but she had only seen it once in her career. Of course, with two weeks to spare before my scan with the high-risk doctor, I went directly to Google to research what that was. All I saw at first was a 0% or less survival rate. Everything else was glazed over. Then came the 16-week scan. We chatted with a couple in the waiting room, who would also find out their baby's gender that day, and waited close to an hour to be seen. I knew in my heart for the past two weeks that our baby had CDH. I think it was honestly my mother's intuition. When the doctor told us it was indeed CDH, I looked at my partner Christian and said, "I TOLD you!" Then the doctor began saying how the baby's chance of survival would be less than 10% and how if we did not choose an abortion, which he highly suggested, then he could refer us to either Stanford or UCSF a few hours east of us, where a level 4 NICU was. We left feeling numb. I was so angry at everything and could not wrap my head around why this happened to us. We were a young family with an almost 1-year-old who lived in a trailer in Nevada. That night, I began researching more on CDH and found the Tiny Hero's Facebook group, as well as the website. I posted and filled out the form on the site. By the next morning, I had well over 20 messages and many more comments on my post. I began to talk to fellow CDH parents, as well as hearing about Dr. Kays (who I had previously heard of when googling pre-official diagnosis) and was even put in touch with a fellow CDH family of two CDH children in our city. I spent the next week contacting Johns Hopkins All Children's, hunting down Dr. Kays right hand (Joy), and fighting with our high-risk office for a referral to the bay area for our next consults.
By early November, I decided we are 100% going to find a way to move to Florida. We began making plans with a few relatives who lived in northern Florida and the finances of it all. My mom made us a GoFundMe, which was the biggest blessing, and then, I finally got the call to go to Stanford Children's for our consult and fetal MRI.
We left the week before Thanksgiving to Palo Alto, CA. We decided to go a day early and take our 14-month-old to San Francisco and make somewhat of a vacation out of it all. The next day, I had a day chock-full of appointments, scans, and a 3.5-hour fetal MRI, which was a mix of tears, watching Monsters Inc. in movie goggles, and induced anxiety from the Ambien they gave me to calm me down, which sadly backfired for them. By Friday morning, after Thanksgiving, we heard back from Stanford. Their chance of survival was 15% or less, and I politely told them on the phone that we would be relocating to Florida for our son's care.
Due to my state insurance and issues with JHACH not taking my initial insurance, we needed to move ASAP. We liquidated our home and everything in it in less than three weeks after our Stanford consultation and sold and gave away 90% of our belongings. We got on a plane to Florida in the early hours of my 21st birthday and arrived at families we would be staying with until March when we would move to St. Petersburg.
Within a few weeks, I was able to figure out insurance, and we FINALLY had our consult date with Dr. Kays and his team for February. The weeks felt like years waiting for our consult time to arrive, and although I still had no idea what our son's chance of survival was, I knew it had to be more than what the west coast doctors told us.
Then, on February 8th, 2020, we got to sit down in a conference room with Dr. Kays and his team, and we heard the sentence "95% chance of survival". I don't remember much else besides that initial conversation besides that sentence. They mentioned between 40-60% needed chance of ECMO, but it did not lower our spirits. We finally found a doctor who believed in our baby.
We moved into the Ronald McDonald house precisely four weeks before Carsten was born and were immediately greeted by other CDH families. It was amazing to put the name and faces together of these people we had been talking to for months over screens and finally felt like we could be at ease.
Carsten Kane Lee Larsen was born at 3:45 pm on April 8th, 2020. I had a super short labor of 3 hours total, and he even cried three times before he was whisked away to be assessed. It was the strangest feeling to be wheeled up to recovery without my baby, but I felt SO relieved that he was born and in the absolute best care possible.
Carsten was doing amazing and stable until day 6. He was scheduled to have his repair surgery later that morning when all of a sudden, his blood gasses came back abnormal. They said he might have had an infection, but it was vague on what kind or how.
By noon, the whole CDH team was in his room, assessing him every few minutes. I was alone on the couch messaging Christian and other families (due to COVID, only one parent was allowed at a time) and trying to hold back tears.
By 5 pm, Carsten had taken a turn for the absolute worst, and Dr. Kays was at his bedside for the next few hours. Around midnight, Dr. Kays had thought Carsten had made a turn, and he felt comfortable going home for the night, but about an hour later, he was called back in at 2 am and was there in less than 20 minutes to put Carsten on ECMO. I will never forget leaving his room for them to do the procedure. My baby did not look alive. He was yellow, and his eyes were cracked open, but no sign of life in them. At 20-weeks, I sat by the window, and the sweetest souled nurse brought me coffee while I called my mom from across the country, telling her I just did not want to see my son suffer anymore, but I also did not want to lose him yet. About an hour later, Dr. Kays came out and told me although this was a rare form of sepsis, he was 90% sure that Carsten would beat this infection. There was a significantly higher risk of bleeding due to him being older than the average baby put on ECMO, but he was very confident in his word of Carsten making it.
A few days later, they were gearing up for the second attempt at his repair surgery. At 7 am, Dr. Kays came bursting in exclaiming that the chest X-ray was phenomenally different for the better than the day before and that Carsten would now have his repair off ECMO. He came off ECMO 13 days later, and although he was well over 20 days when he finally had his repair, Dr. Kays and his team knew the perfect time to do it. Carsten had only 15% of his diaphragm, 23% of his liver up, and his heart was fully pushed to his right side. He remained on the vent for a few more weeks but was able to come off of it right in time for me to hold him for Mother's Day.
Carsten did have severe reflux and oral aversion, so a G-tube and Nissen were needed and placed six weeks after his repair surgery. He was discharged from the CDH unit on the 4th of July after 94 days!
A week later, we packed up and drove across the country (thanks COVID for the no air travel) and drove through more than eight states to come home to Nevada. Carsten began seeing a multitude of therapies and specialists and has made and is still making amazing improvements! Carsten is now almost six months old and a LOVER of life! If it wasn't for Dr. Kays and his team, Carsten would not be here today. To cuddle his mama, get hugs by his sister, laugh at his dada, or his favorite - lick the gravy off forks.
We will never be able to thank Dr. David Kays enough and are so grateful for the Tiny Hero organization for helping and guiding us in this life-changing journey. Although we will never know exactly why Carsten was born with CDH, we do know that he has shown us a kind of strength we did not know existed and the sheer determination to fight no matter what.