CC’s CDH Story

Cecilia "CC" Mae Maloney was born on August 22, 2023, with severe (Mass General Brigham and Boston Children’s Hospital) left-sided CDH. Now, months later, she is finally almost ready to come home — and just in time for the holidays!

CC's journey began in February when she was just a few months old in mom's womb while at a routine ultrasound near home. We didn't want to know the gender yet (we had names picked out for either scenario) and feared during one of these ultrasounds that they might let it slip (which kind of happened, and we found out anyway just two months before she was born) and reveal the gender. But something else happened. The tech left the room abruptly without saying a word and got the doctor. The doctor informed us that she had CDH and that they would need another ultrasound to confirm and determine the severity. As the weeks went on with this news, we learned more and more about CDH. We also had routine, almost weekly, visits to Mass General Brigham Danvers campus, where our original OB was. Once we learned the left-sided CDH was deemed "severe" and that we should get high-risk pregnancy options, like getting in with a new OB and hospital specializing in CDH. First, we were presented with the option to terminate the pregnancy, which, no matter what, even if we were told a 1% chance she would survive after being born, we weren't even considering that as a viable option. Not because of religious beliefs or reasons but because we had come too far and trusted so much in modern medicine that we knew it would be alright. So, with that, we knew we had to get with one of the top CDH hospitals and doctors. Luckily, we live 45 minutes north of Boston, a medical hub.

We first went to MA General in Boston and were given a 20% chance of survival post-birth, and most certainly, she would go on ECMO. I thought that would be it, but my wife was determined to get a second opinion. She heard about Dr. Dickie at Boston Children's Hospital. So we went and met with Dr. Jill Zalekis (Part of Dr. Dickie's team of CDH specialists), and after they reviewed MA General and their findings, they were giving us a 50% chance of survival, but that ECMO was likely. So that was in the Spring, and we went with BCH and Dr. Dickie. We were actually staying quite optimistic leading up to Mom's induction date of August 20th. Boston Children's was the right choice. In the weeks leading up to CC's birth, we got constant communication and updates, regular (but not overly inconvenient) visits, and met with various doctors and specialists there and with our Brigham & Women's Hospital delivery team (OB portion). The plan was to have CC born via Mom being induced at Brigham, then CC would have BCH and Brigham doctors working together and whisk her off across the bridge to BCH after birth for immediate treatment.

On Sunday night, August 20th, 2023, Melissa was brought in by her husband James (Me) to Brigham & Women's Hospital in Boston, where her new OB had already set up the liaison with Children's Hospital. Then we waited. CC was finally born vaginally at 9:44 pm on Tuesday, August 22, at 7lbs (estimate, I can't recall). She was given to Mom for half a second, then over to have the doctors to cut the cord and place her in the giraffe thing (which looks like an incubator). Then the team from Children's took over and wheeled her over (with Dad in tow) to the Medical Surgical ICU (MSICU) on the 8th floor of the Berthiumane building, where she would begin her treatment and stay for two months. Cecilia didn't need to go on ECMO. They felt confident in just intubating her with a respirator. We were told she was stable and that she needed to rest. Two days later, they elected to do the repair surgery to give her time to recover. That was the worst 5 hours of our lives waiting to hear back. We were given a call about 5 hours into the surgery to say that Cecilia was okay and did fantastic. They got some interesting photos from inside her body of her normal and healthy right lung and the sequestration they removed as well (left I believe). The doctors commented that aside from the CDH, she is a normal-sized, healthy baby for what it's worth.

The next several days were very scary. She had to be bagged a couple of times and turned blue. One time, we got called in because it "wasn't looking good." Mom was at home recovering, and Dad had stepped out to get our dogs. Luckily, she bounced back as soon as Dad got back. Mom had to recover, especially after giving birth, for almost two weeks. Dad never left Cecilia's side unless to sleep in the room or at a nearby hotel. Once Mom was feeling better, she immediately joined Dad in what became a hopscotch of covering home and our two dogs and being with CC every possible moment. CC, at this peak point of her care, was set up with an IV for nutrition and meds (lipids, morphine, BP meds, etc.) with a PICC line, intubated, and electrodes everywhere. Fortunately, there was no ECMO.

CC was doing better every day. Eventually, as the weeks progressed, she shed off the ECMO possibility to 0% chance of needing to go on it. She was extubated and able to breathe on her own around one month old. Then, a series of medications were slowly weaned off, as she was having quite a bit of pulmonary hypertension (which has also since resolved).

In early October, we were told we would move from the eighth-floor MSICU to the tenth-floor inpatient recovery floor! It was so exciting, and right when we got there, they tried a neonatal NJ tube because even with the scoping, they couldn't get a regular NJ because of bleeding in her nose. So, in early October, we began Mom's milk feeds via pump and NJ.

In late October, her PICC line was removed, and she was taken off all supplemental IV nutrition. We continued to attempt bottle feeds, but she would usually only take 2-3 mLs in a sitting and was somewhat averse to the process as well as the pacifier. We had a G-Tube scheduled for mid-November that we canceled at the last minute to try and do it the bottle feed route, but as the weeks went on, it was clear she would need to get the G-Tube, so we scheduled it for December 1st, and it was a huge success!

I should also add that during all this time, her hernia repair was holding strong, and all her other organs were doing just fine. For all intents and purposes, she would be considered a normal, healthy baby. Even her left lung had caught up to her right lung, and her hypertension was no longer an issue. The only battle we were facing now was getting her to bottlefeed, which was proving difficult but not impossible, but the toll it was taking on Mom and Dad in the hospital was apparent.

So here we are, just one week away from bringing her home as I write this, and we cannot thank the staff at Boston Children's Hospital enough. They saved her life, and after almost 114 days, we are home!