Ellie’s CDH Story

Ellie’s story began at a Yankees game when my water broke four weeks early. Although I could have made it to the hospital where my OB was affiliated, I felt a bit scared and ended up going to the closest hospital to the stadium, which was New York Presbyterian – Morgan Stanley Children’s Hospital. Little did we know, this decision turned out to be the best thing that could have happened to us.

Ellie was born within 24 hours of my water breaking, and since she was premature, the NICU team was on standby. She had some difficulty during the delivery, and when she finally arrived, her initial cry was not considered "normal." I was only able to hold her for half a minute before she was whisked away, and everything quickly turned into a blur.

I’m not sure how much time passed before the NICU team came back to update us. Ellie was born with undiagnosed right-sided congenital diaphragmatic hernia (CDH). Nothing can truly prepare you for this, especially as a first-time parent. The flood of information that my husband and I received left us in a state of shock. Still affected by the epidural and elated from giving birth, the weight of what lay ahead was something we could hardly comprehend.

We learned that Ellie had a hole in the right side of her diaphragm, and she needed surgery, though the timing was uncertain because she was very ill. It was determined that her right lung had been compromised, primarily due to her liver’s position. She was immediately placed on an oscillating ventilator and given a range of medications. They started her on Iloprost for pulmonary hypertension, along with Epinephrine and Fentanyl to manage her pain and allow her to rest. I couldn't see her until a couple of hours later, and it was heart-wrenching to realize our baby was fighting for her life.

There were discussions about ECMO (extracorporeal membrane oxygenation) because she was so sick and wasn’t showing signs of improvement from the combination of medications she was receiving. Fortunately, our little fighter didn't require ECMO, but other complications arose. On Day 3, they initiated a cooling process to lower her body temperature, hoping to alleviate the brain inflammation that had begun to develop. On Day 4, they started warming her back up, and it was a success! Her body responded well to the cooling process, leading to a decrease in brain inflammation and allowing her to begin tolerating the medications. Ellie underwent a plethora of tests, including continuous MRI, ECHO, EKG, EEG, ultrasounds, and X-rays to monitor her condition. She also received a PICC line due to the numerous medications and fluids she needed.

My husband and I could only touch our daughter, Ellie, if we asked the nurses for permission. Every day, we received updates from the doctors and nurses who were working hard to help her recover. Each morning at 9 a.m., they held rounds, during which we would listen to the next steps in her care, if any were planned. The surgeon stopped by intermittently to check on her status, as his primary concern was to patch the hole as quickly as possible so Ellie could start her healing process. On Day 8, she was able to breathe a bit better on her own and was moved to a conventional ventilator. Gradually, they reduced the levels of oxygen and nitrous oxide, hoping to let Ellie do more of the work herself. By Day 10, our little girl had fought so hard that the doctor and surgeon agreed she was healthy and stable enough to undergo surgery to repair her diaphragm. Seven hours later, the surgery was successful! Ellie had been missing 50% of her diaphragm, and her liver was pressing against her lung, with intestines having moved up through the hole. On this day, Ellie finally opened her eyes, allowing us to see her beautiful gaze for the first time. Both of her grandmothers had the chance to see her that day as well.

Days after surgery, the doctors began weaning her off her medications, and we were able to assist with some of her care. This included taking her temperature, helping change her diapers, and assisting with suctioning on the ventilator. On Day 20, our little Ellie was transferred to a CPAP machine, which was a significant milestone since her oxygen saturation levels had been consistently low. With the CPAP, we were finally able to hold our daughter – a moment we had been eagerly waiting for, and we couldn’t hold her long enough.

We took advantage of a time when her cares were being done, and the staff removed the CPAP for a short while. She was a beautiful baby, breathing on her own and very aware of her surroundings. Ellie also began learning to feed from a bottle, with the hope that she would be able to breastfeed after coming off the CPAP.

On Day 38, she was moved to a nasal cannula, and each day she was breathing better and better. By Thanksgiving, on Day 52, she was off oxygen completely and breathing on her own. Thanks to the perseverance and dedication of the doctors, surgeons, nurses, and techs, we were able to bring Ellie home for Christmas.

Ellie spent a total of 76 days in the NICU, fighting for every single one. Today, she is two years old and thriving. She came home with a G-tube, which she still has but is nearing the end of its use, as she is now feeding herself. Ellie continues to receive physical and feeding therapy, along with check-ins at the CDH clinic, NICU, and from a gastroenterologist. She is effervescent, goofy, chatty, active, and happy—she truly is our little light.

I am unsure where we would be without attending the Yankees game and Ellie wanting to come out early. I will never be able to thank the doctors, surgeons, technicians, and nurses at New York Presbyterian – Morgan Stanley Children’s Hospital enough for working around the clock to ensure Ellie received the best care possible.

Going into my 20-week scan, I was completely unaware of what to expect. I even had additional follow-up scans because they couldn’t locate the liver. All the doctors cleared me and said everything looked good, but now I realize I was naïve and should have asked more questions. In hindsight, I would advise others to be curious—no question should feel too out of the ordinary. If something feels off, don't hesitate to ask about it. I should have known better and sought clarity. I am just grateful that I was in the right place at the right time.

My sister directed me to Tiny Hero, which provided me with an abundance of knowledge. I am truly thankful for that community. Every case is unique, with different outcomes, so it's important to be patient and find some time for yourself along the way.