Featured cherub of the week is cherub Hudson Powers. Hudson is the son of Jared and Kaytlyn Powers. Kaytlyn is CDH International’s Texas State Co-Representative. Kaytlyn had this to share about Hudson:
“We found out we were having our first child in May of 2016. During a routine 16-wk growth scan in mid-August of 2016, we found out that our Hudson has Left-Sided CDH. We walked into that appointment expecting nothing out of the ordinary and walked out with a diagnosis we had never heard of, and the sudden realization that our “normal” pregnancy no longer existed.
We were referred to a high-risk MFM, and the next 10 weeks were filled with detailed ultrasounds, cardio echograms, amniocentesis, MRI’s, three “second opinions”, and all of the “googling” we could fit in to our spare time.
Hudson had CDH on his left side, and his stomach, intestines, and a portion of his liver, were in his chest cavity. Amniocentesis ruled out any chromosomal abnormalities. The CDH was “isolated”, so outside of CDH, he was a perfectly healthy little boy. They placed Hudson’s CDH in the moderate-tosevere category of cases they see, and expected that when he was born, he would have about 30- 35% lung capacity. They gave us a 60% survival rate and a 45% chance of needing ECMO.
We visited several area hospitals in New York and fell in love with the team at NY Presbyterian/Columbia Children’s Hospital. We knew we had to choose a hospital that would be able to provide him with the highest level of neonatal care, and one that had an ECMO program.
Hudson was born at 38 weeks and 6 days, just about a week shy of his scheduled induction date. He was 6lbs 8oz, and 20.5 inches long, with a head full of red hair. He didn’t cry, and he was blue, and he was the most beautiful baby we had ever seen.
Right after delivery, Hudson was rushed right to the transitional nursery with his team. Since learning about his CDH, we knew that we wouldn’t be able to hold our baby right away because of the immediate care he would need. We had been dreading that moment and the feeling of having him “taken away” from us. After about 45 minutes we received an update from the Transitional Nursery that they had been able to stabilize him on a conventional ventilator using close to 100% oxygen support.
Hudson’s first days in the NICU were a learning experience for us. Lots of monitors and tubes, and lots of beeps and noises. It’s tough to learn that all of that is “business as usual” in the NICU and not something to be worried about. He fluctuated on support needs, changing from the conventional to the oscillating ventilator, but he ultimately did not need ECMO. By Day 5, Hudson had his hernia repaired with a Gore-Tex patch by Dr. Stylianos. Surgery went well, and he was extubated about a week later. Hudson spent a total of 8 weeks in NICU recovering from surgery, working on feeds, and weaning oxygen support. We were discharged home with an NG tube to supplement his feeds, nasal cannula oxygen, pulmonary hypertension meds and reflux meds. We were also told they would be monitoring his heart because of a common but treatable congenital heart disease called Patent Ductus Arteriosis (PDA).
At 4 months old, Hudson was admitted back to the hospital for acute respiratory distress. He had developed aspiration pneumonia, and his little lungs needed a lot of extra support. Within 24 hours, he was intubated because he was having pulmonary hypertension crises, which is common for kiddos with PH to have during respiratory illnesses. He was intubated for 2 weeks, and during this hospital stay doctors decided that in order for his PH to improve, it was time to perform a PDA ligation in order to hopefully help with the cardio/pulmonary issues he was having. The surgery went well, and we saw improvement in his hypertension almost immediately. Within a month, we were back at home with our boy.
We were able to wean Hudson off of his oxygen and NG feeding tube by 7 months old. On his first birthday, we relocated from NYC back to our home state of Texas and sought out a new medical team of specialists to follow him. Hudson had a tough first viral season as so many medically fragile children do. We were in and out of the doctor’s a lot and made the decision to keep him out of daycare until Spring of 2018.
We brought Hudson into the ER in April 2018 because he was vomiting a lot and seemed very uncomfortable. We had a sneaking suspicion that he had re-herniated, and sure enough x-rays proved us right. He had a few loops of intestine and some spleen back in his chest cavity. So, at 16 months old, Hudson underwent his 2nd repair. Dr. Rana, our surgeon at Dell Children’s Hospital in Austin, TX was able to augment his Gore-Tex patch. The surgery was successful and went off with no complications. We were home within 10 days.
Winter of 2018 was Hudson’s first viral season in daycare, and as expected, it was rough. He was hospitalized in December for RSV for a week, and again in January for another virus. Because of his chronic lung disease, we know he is very susceptible to illness, but we found out that part of the reason he was having so much trouble, was that he had re-herniated yet again. Since he had re-herniated, his left lung could not fully inflate, and this was compromising him even more.
Dr. Rana felt that at this point, his two repairs had not held because he had so little diaphragm to begin with, and the patch was tearing away from where it had been placed because he was growing. His body wasn’t creating new diaphragm tissue to keep the patch secure. It was time to reevaluate the approach. Ultimately, his doctors felt that he was ready for a latissimus dorsi flap. With a team of 3 surgeons, he underwent his 3rd repair on April 19th, 2019, at age 2. This was an 11-hour surgery, and he was intubated for about a week afterwards as the doctors wanted him completely still and sedated in order to ensure the healing process went smoothly. These intubations have always been extremely stressful and scary for us, because we’ve experienced a few cardio/pulmonary episodes with him that have required resuscitation. We are incredibly thankful for the stellar team of doctors and nurses that have neem so responsive, and truly believe that he has always been in the best of hands.
Hudson has recovered wonderfully from his latest repair. We hope this will be the last repair he will ever need, but we know nothing is ever certain. We hope his lungs will continue to grow and that we can shield him from major viral illness as much as possible. Outside of those issues, Hudson is happy, healthy, and thriving. Every CDH kiddo has a different path to travel, and no path is identical. For our family, our ongoing worries surround chronic lung issues, reflux, and weight gain.
In 2016 when we found out about Hudson’s diagnosis, we had never even heard of CDH. We had no idea what to expect. 2.5 years, 4 surgeries, and several hospitalizations later, we’ve learned so much about CDH. We’ve learned about the importance of parent advocacy, self-education, and having a strong medical team and support team. Our journey with our son has been absolutely unpredictable but amazing. Most importantly, we’ve witnessed our resilient little miracle baby grow into a happy, smart, energetic, stubborn little warrior dude! Hudson Wayne, The Warrior Boy.