Harlan's Story - Congenital Diaphragmatic Hernia (CDH)

Finding out we were pregnant was an unexpected but exciting time for us as it was our first child. From the beginning, it was difficult as I suffered from hyperemesis which is what led to being hospitalized for IV fluids, finding a liver issue, and ending up in maternal fetal for closer monitoring. We had been looking forward to our appointment for a while knowing that we would FINALLY get to know what our precious babe was! After this wonderful sonogram, we had a meeting with the perinatologist, Dr. Leonardi. We discussed my liver issues in depth and he assured me they would just keep monitoring it. Then…he said the words no one ever wants to hear, “now there is something more serious we need to talk about.” My stomach immediately dropped, and the room became quiet as he continued on to say, "your child has a congenital diaphragmatic hernia."

My husband was in shock, and I couldn't stop crying. Being a nurse, I had cared for CDH kids before and knew some of the many challenges they face. I honestly believe that God placed us in their office that day so that we could be with the best people possible when we heard this news. We cried, we researched, we talked, we prayed, and we continued on, continuing to prepare for the biggest fight of ours and our son's life.

Up until his birth, the sonograms had showed only stomach and bowel in his left chest and his heart and pulmonary vasculature was all intact. Fast forward to October 11th, the day we finally met our son Harlan. After 36 hours of intense labor, Harlan William Monk entered this world at 8lb 2oz and 21 1/2 inches long. He was immediately intubated and taken down to the NICU. He did so well the next few days they were able to transport him down to surgery. We assumed he most likely only had a small hole in his diaphragm. However, his surgery lasted 5 hours and upon talking with the surgeon, we learned his stomach, bowel, spleen, and part of his liver were up in his chest; he required a large patch, which is not what any of us had expected.

Harlan fought hard over the next few days, but his lungs were just too weak and his pulmonary hypertension too great and despite every effort he had to be put on ECMO. I was terrified as I watched him lay there completely still and his oxygen saturations drop to the 60's despite being on 100% oxygen, nitric oxide, milrinone, and flolan. He was gray and just looked so tired; that day we thought we were going to lose him. But God had different plans and put the right people in place to get Harlan stable and ECMO allowed his lungs to rest for 5 days until they were well enough to breathe for his body.

On Harlan’s 37th day of life, he had a bronchoscopy and stayed extubated for good despite two prior failed attempts. Once he got down to high flow oxygen, we were able to start feeding which was a big obstacle; Harlan struggled terribly with reflux and vomited often. I remember being scared as I watched him use his whole entire body just to breathe because his reflux had compromised his airway. We cried as we realized he would require yet another surgery for a gtube and nissen.

That day while Harlan napped I decided to take a walk to the gift shop and found a plaque that said, "perhaps this was the moment for which you have been created." I knew God was telling us to just hang on and that this experience was going to make us stronger. So, hang on we did.

Through the following weeks, we struggled with withdrawals, feeding issues, and reflux but we also were blessed to experience Harlan coming off of oxygen, overcoming withdrawals, and persevering through every other obstacle. After 85 days of being hospitalized, we were able to bring our son home!

Over the next few weeks, we would be hospitalized twice more for feeding and formula intolerance issues. At 5 months old during a follow up echocardiogram, we found out that Harlan's pulmonary hypertension had worsened, which we had been suspicious of due to his oxygen levels dropping to the 70's and 80's and his lips turning blue when crying. That day he was put on oxygen which was an adjustment but helped him breathe easier and allowed his lungs to grow.

We got to remove the oxygen on his first birthday, which was the best birthday present ever! With the help of many therapies, Harlan is now a thriving 15-month-old with a constant smile on his face who cruises everywhere, eats everything by mouth, and babbles up a storm. We are so grateful to God and the staff at Children's Hospital of Illinois for saving our son and continuing to support him and us throughout the many obstacles he has faced.