Featured cherub of the week is CDH survivor, Benjamin “Benji” Carr. Benji is the son of Andrew and Barb Carr and they had this to share about their son:
“After years of fertility struggles and an ectopic pregnancy, we were thrilled when we found out we were pregnant with a boy. Our excitement came to a screeching halt at 20 weeks when an ultrasound showed his stomach in his chest, at which point he was diagnosed with a diaphragmatic hernia. We had never heard of CDH and the doctors didn’t know if he’d survive. We were referred to specialists and waited two long weeks before our initial consultation. We spent the entire day at the hospital, with more than 5 hours of it spent on ultrasounds and echocardiograms. Patients at this hospital with CDH generally had a 70% survival rate which, while higher than the national average, was frightening for us as first-time parents. Benji had a left CDH and his stomach, small and large intestines and part of his liver were all up in his chest.
We were monitored every few weeks by the specialists. It meant a lot of time away from work and lots of worry but it helped to hear the range of outcomes and treatments that would be available once our son was born. We also sought a second opinion to make sure in-utero intervention (the balloon surgery in clinical trials) wasn’t something we needed to do. After further pregnancy complications and 5 weeks at home on bedrest, I was admitted to the hospital across the street from the children’s hospital. There we sat and waited for another 3 ½ weeks, listening to our son bounce around on the monitor 3 times daily, until the team scheduled a c-section delivery for 37 weeks. The decision to deliver at 37 weeks was a compromise between delivering as early as possible due to my complications and delivering as late as possible due to baby’s CDH. The team of doctor’s determined 37 weeks would give both mom & baby the best relative outcomes without compromising both of us.
The morning of delivery was absolutely the most terrifying day of my life. I was terrified that our baby boy wouldn’t survive once he was removed from the womb. Despite the team working very quickly (30 people were in the OR), we were able to hear 2 short cries from our son before he was intubated. The intubation process was a challenge, as my husband can attest. Once he was successfully intubated, they wheeled Benji up by my head so I could see him through the transport incubator before he and my husband left the OR for the NICU. Two hours later, I was finally in recovery and Benji was brought in to see me before being taken across the Bridge of Hope to the children’s hospital. Our amazing doula captured this moment on film and I am forever grateful to have these 2 minutes of footage! This was the first time I could talk to and see my son after delivery, and I even got to hold his hand as he turned his head towards my voice.
Later that afternoon, the children’s hospital called and summoned me to Benji’s bedside as he was not doing well. He was on an oscillator, nitric oxide, and all the drugs available, receiving what the team described as “maximum medical support.” The next day, he was placed on ECMO life support. This was incredibly difficult even though we had been prepped before he was born and knew it was a possibility for him; it had also been presented to us as the last possible treatment for him and we were astonished at just 24 hours old that he already was on the last option to save his life. As he received continuous blood transfusions, he was given a full day to rest on ECMO before undergoing his CDH repair surgery. Four days later, our strong little guy was taken off ECMO – his third surgery in his first week of life. The next day (at 8 days old) I was finally able to hold my son. It took an entire team of nurses and respiratory therapists to transfer him to my arms but I didn’t want to let him go. My husband was also able to hold Benji a day later, and for the first time it really felt like we were a family.
After successfully battling pneumonia, two weeks later Benji was extubated and began working on feeds (both bottle and breastfeeding skills development, while most nutrition came through his NG tube). At a month old, Benji had a setback and required a blood transfusion. A month after that we were preparing to bring him home but on discharge day, x-rays revealed a rehernation. We stayed in the hospital another week before the team decided to send us home and let Benji get stronger before doing another repair surgery. This meant we brought our babe home just before his first Christmas, and before flu and RSV season peaked.
Those months at home were amazing but filled with worry as we continuously watched for signs of reherniation. We had a home nurse visit twice a week to check his breathing and weight gain. At 6 months old, Benji again underwent surgery and to everyone’s astonishment, the team found he had not reherniated but that his patch had just bowed upward, so the x-ray showed a colon loop higher than normal. This was a good reminder that Benji’s “normal” is different from everyone else’s and proof that we will always have to explain his condition if he ever needs medical treatment outside of his team of specialists.
Today Benji is 15 months old and doing well. We’ve continued to struggle a bit with feeds and weight gain but know it could be so much worse. He still wears oxygen to sleep overnight but is standing, nearly walking and speaking more and more each day. He requires a lot of care and can’t be out in public, but we love being parents and watching him grow and learn. We are fortunate to have Benji’s grandmother provide childcare while we work. An occupational therapist still comes to the house every week and a dietitian visits every month.
Update! As of Friday, January 24th, we are trialing Benji sleeping with just room air overnight – no longer wearing an oxygen cannula! He has done amazingly well the 3 nights since his appointment with the pulmonologist so we hope this will continue. We still have oxygen in the home for us to use at the first sign of a struggle or if his pulse-ox monitor alarms with low oxygen numbers but this is another step in the right direction with his recovery. And for the first time in nearly 16 months since birth, Benji doesn’t have stickers on his face anymore!
I’ve often thought about what it would have been like if we hadn’t known about his CDH until he was born. While I could have been blissfully ignorant through the pregnancy, we wouldn’t have had time to prepare each other, our friends, family, coworkers and church family. We were blessed with a very strong support network (in addition to Benji’s and my phenomenal medical teams), so I think everything happened the way it was supposed to. I connected with two local CDH moms through a Facebook group and met another CDH family while in the NICU. That family told us about CDH International and it was so touching to receive the care package from CDH International after another long day at the hospital.
Here’s what we’ve learned that I would want other families to understand given a CDH diagnosis:
- Do your best to remain cautiously optimistic. Although we weren’t sure we would ever bring our baby home, we still had baby showers and celebrated the anticipation of his birth. We just kept tags on everything and didn’t wash everything until we were a few days away from hospital discharge (in case Benji didn’t survive and we had to return things). Instead of games, people made nameplates for Benji’s NICU bed and encouragement signs to hang around him in the NICU. We decided on his name and nickname and socialized it with family, friends and the medical team ahead of time. And we decided that my husband would go with the baby as soon as he was born; if Benji didn’t make it, we wanted him to have the sound of at least one of his parents’ voice amidst all the chaos.
- Make a plan – and then be prepared for things to not go according to plan.
- The baby is in charge. Benji’s medical team kept telling us that, and they were absolutely right. I didn’t fully realize this until the day they were preparing to take him off ECMO and they turned off the flow of the ECMO machine to test Benji’s little body; he proved that he was ready to step down to the next level of support.
- Do not blame yourself for the diagnosis. Multiple practitioners told us that as Benji’s parents, we didn’t cause this, we couldn’t fix it, and it was just how he was made.
- You cannot compare your child to everyone else’s – especially if he has a defect like CDH. The few CDH families we’ve linked with have been very supportive and provided great advice, but all of our children have had different outcomes. That is to be expected with this condition.
- Do not go about this alone! We were blessed with card showers sent from coworkers, baby gifts sent to the hospital, a doula who helped us before, during and after delivery; and a Meal Train where people signed up to bring dinners to the hospital or drop them off on our front porch for when we got home from the hospital. Then we learned about CDH International and received the care package and weekly email updates from them.
- No matter how much you prepare, people won’t understand it until they see the surgery scars, watch labored breathing, and realize the severe medical intervention required for CDH. Because it’s an internal defect, it’s hard for people to understand when they look at what appears to be a “normal” baby. This makes it even more important to support ongoing CDH research.
- Blood donations saved both Benji and my lives and so we continue to try to pay it forward by helping organize and publicize local blood drives. We eat right, exercise often and are otherwise healthy people, so I never thought I’d need a blood transfusion. Please help support the next family in need by donating if you are able; and if you aren’t, perhaps a friend or relative could donate in your place? As someone who used to have a profound fear of needles, I spent weeks with IVs in my arms and now realize the importance of blood donations.”
