Wells’ Story - Congenital Diaphragmatic Hernia (CDH)
Wells has a story worth telling and, now that we are a year in, we feel like we are finally able to tell it so here goes.
We found out about Congenital Diaphragmatic Hernia (CDH) the same way most parents do, at our 20-week ultrasound. We had gotten a babysitter and we were excited to find out the gender of our second baby. Little did we know, finding out the gender was the least exciting thing we would learn that day. As our appointment began, our doctor scanned all the normal things, took measurements, and announced we were having a baby boy. We were so happy! Then the scan seemed to slow down and focus a lot on the baby's abdomen. We didn't panic. We were too excited for another baby boy in our lives. When our doctor finished, he told us not to panic, but we need to go to Denver (our closest Children's Hospital) and get some additional imaging done on our baby.
With a little persuasion, our doctor told us he "thought" our baby had a CDH and would need surgery. So, of course, we panicked.
As we waited for appointments, we assured our family that our baby was healthy and thriving. We convinced ourselves it was just something weird in the pictures and we knew it would all be okay.
The following week, we went to Rocky Mountain Children's Hospital in Denver, Colorado and we were greeted by a nurse navigator upon our arrival. At that moment, we knew this was more serious than anyone was letting on.
Following an ultrasound, they confirmed our baby boy did in fact have CDH. In a fog of confusion, we booked appointments, got information about the diagnosis, and were sent home to wait it out. Our "it might be something" appointment was blown up and our emotions were overwhelming. We were given a 40% chance of survival. They told us our NICU stay would be a minimum of 6 months and that other medical issues would likely have long-term effects on our baby. We were crushed. So, of course, we did the next logical thing every parent would do: we Googled it.
We Googled everything we could find. We quickly found Tiny Hero and read every blog, we found support groups on Facebook, and we CDH'd ourselves every evening trying to wrap our mind around what was coming. We continued with a plan for care in Denver and our monthly care appointments until a fellow CDH mom reached out to me in a Facebook group and asked if I had considered Johns Hopkins All Children's Hospital in Florida. I hadn't.
We live in Wyoming and we own a business, we ranch, we have a toddler… there was no way Florida was an option for us. She understood but convinced me that a phone call did not cost anything and maybe they would have some ideas for my team in Denver. That phone call changed everything. The team in Florida asked me questions I could not answer but knew I should have been able to. They asked about tests I had wanted but we were told in Denver that it didn't matter. I could tell they were just as concerned about my baby as I was and it was a relief. I hung up that phone, looked at my husband and said, "we have to go to Florida."
The following month, we went for a visit and testing. Dr. Kays, Joy, and a few other members of the Johns Hopkins team sat down with us and explained everything. What CDH was, what our tests showed, where we fit on the CDH spectrum, and what they thought our experience might look like. Dr. Kays gave us a 90% chance of survival, 30% chance of needing ECMO and never once told me not to worry about it. We left the meeting knowing we had to figure out how to have this baby in Florida. Thankfully, the pieces fell together easier for us to relocate across the country to Florida than it was working out to go to Denver. My parents took care of our business and ranch, my mother-in-law took a long leave from school to move with us and care for our toddler, and the Ronald McDonald house was actually open to us.
January came and my husband, a carload of our stuff, and my father-in-law left to drive the 31 hours to St. Petersburg, FL. Two days later, our two-year-old and I flew in to meet him. I will never forget the relief we felt finally being in Florida and being close to the team that we knew would save our baby.
A few weeks later, on February 17, 2021, William Wells Lenhart was induced at Johns Hopkins All Children's Hospital. He was delivered by a team of people and immediately intubated to assist with breathing. They rolled his isolate to my bedside for a quick glance of my perfect boy and then he went off to the CDH unit my husband. The delivery nurses got me back to my room, fed, rested, and then a few hours later, I was able to go meet my baby. Due to COVID restrictions, only one parent was allowed in the CDH Unit at a time but since I came in a back way, no one noticed, and the nurses gave us a couple of minutes together as a family. I am forever grateful for that. Wells was on a ventilator, sedated, and had multiple pulse-ox sensors. Our nurse saw the overwhelmed look in my eyes and explained them to me. He had a PICC line for medication, a catheter, and two lines in his belly button for blood draws and medication. It may sound overwhelming, but he was in wonderful shape. He was stable, he was here, and he was going to be okay. Deep down, I just knew it.
Wells remained stable and began to drop his ventilator settings even before surgery. They had him as low as they were willing to go pre-surgery and, on day 5, he had his diaphragm repaired. My husband and I waited together in the cafeteria for a call because even on surgery day, only one parent was allowed in the hospital at a time. Wells was missing 50% of his diaphragm. His stomach, intestines, bowel, and 25% of his liver were above his diaphragm. He received a patch for his repair and thankfully had no other complications or genetic issues. We were blessed.
Wells quickly became the rockstar in the CDH Unit. He never missed a beat weaning his ventilator settings or hitting the expected milestones. 10 days after birth, he came off all of his sedation and, on day 11, he was extubated. No more breathing tube! Wells was doing well and the entire CDH Unit and our family were so glad to report that daily during rounds. On March 1, we were able to hold him for the first time and, on March 3, one day before his due date, he began learning how to eat. 3 days later, he moved off of CPAP and onto wall oxygen. That is when you start to feel like the end is in sight. It is magical! During our first month, Wells went from intubated with tons of wires to only one set of sensors and low oxygen support.
Wells celebrated his one-month birthday by letting his Mom and Dad "room in" at the hospital. This is the final step before discharge to ensure parents are ready to care for their medically fragile baby after they go home. Wells would be discharged from the hospital on March 19, a short 31 days after checking in and one week sooner than what the best-case scenario looked like when we received the diagnosis.
Outside of the hospital, his Grammie and brother were able to meet him for the first time. His brother was so proud to bring him "home" to the Ronald McDonald House and we were so happy to finally be a family of four outside of the hospital walls. Wells and our family would remain in Florida for another week getting life ready to travel home and proving that we were stable enough to travel back across the country with our new cowboy.
Wells was on aspirin, a diuretic to help keep fluids moving, and a low dose of lansoprazole to reduce acid reflux, as well as the lowest setting of oxygen possible. We attended our one-week appointment and Dr. Kays recommended we stop our aspirin and diuretic once home and even would have taken him off oxygen if his mother wasn't so nervous about flying. He told us to take our healthy baby and go.
Once home, Wells' first year would look very normal. On April 7, he got the okay to be officially "cordless" and we would never need his oxygen again. He has hit all of his milestones on time and the only complication we have encountered has been a battle with reflux which has thankfully been managed for the most part with medication and diet. He is a growing and happy cowboy kid who you would never know anything was wrong with if he didn't have the scar to prove it.
We are forever grateful for the Johns Hopkins Team. Dr. Stone, Dr. Kays, the nursing staff, the RT's, and the practitioners. They saved our baby and made our experience of a scary thing so much better. We know they are the reason we are able to write a happy and positive story today.
When we were first diagnosed, we went to a hospital where our baby was going to be the sickest baby in the NICU, where they would see how things went once he got here, and where we were going to be a unique case that would take a long time with uncertain results. I am so thankful for the mother who told me to get a second opinion because, at Johns Hopkins, my baby was typical and would be the healthiest baby in the unit during our stay. Everyone from the nurses to the doctors to the front desk staff knew what CDH was and why we were there. No one ever told us our baby wasn't going to make it and no one doubted he would go home healthy and thriving. It was so nice to be in a place where you didn't have to explain what was happening. I highly encourage every parent to find the place where they feel comfortable for their child's care. Johns Hopkins All Children's Hospital was that for us.
