Makenna's CDH Story — Tiny Hero: Real Hope for CDH

At 27 weeks, after several ultrasounds confirmed our baby girl was "perfect," we heard the words no parent wants to hear: "I see a problem with your baby..." We left that appointment devastated and with little hope. We ended up turning to Google for guidance. Of course, Google was terrifying; however, it ultimately led us to our hero. The name Dr. David Kays kept appearing in all of our searches, and we knew he was the one who would save our daughter's life. We thought a surgeon of his caliber would be untouchable for regular people like us. We figured he would be too busy and expensive for our little girl and us, but we contacted him anyway. We were shocked when they emailed back immediately and, without hesitation, wanted us down there for a consultation ASAP. During our consultation, Dr. Kays personally made time for us. He made us feel comfortable, got to know us, educated us, and gave us so much hope! We left knowing in our hearts that our baby would be okay. The fetal MRI and several ultrasounds before she was born indicated that Makenna's CDH was on the milder to moderate end of the spectrum. He estimated she would need 21 days in the NICU and would come home on November 21st (although after she was born, she was difficult to intubate and quickly began crashing). Thankfully, Dr. Kays was in the delivery room (even though she arrived 3 weeks early and in the middle of the night, he was there!), and he took over and intubated her himself. We knew at this point it was much more severe than anticipated because even with full ventilator support, her O2 dipped so low she needed emergency surgery to be placed on ECMO. While on ECMO and shortly thereafter, she challenged the team and presented them with complications unlike any before. Thankfully, even in uncharted territory, Dr. Kays had hope. He just kept rewriting the plan, and with his help, Makenna continued to persevere! He said Makenna "wanted to purchase the whole CDH package." When she was 11 days old, she finally came off ECMO and had her repair surgery to fix her diaphragm. We learned she did, in fact, have severe RCDH. She had over a 2-inch hole in her diaphragm, and all of her intestines, bowel, spleen and half of her liver were in her chest. She had 30% of her right lung and an estimated 60-70% of her left lung. Even still, Dr. Kays never gave up, never focused on statistics, and always believed in her.

Dr. Kays and Joy both fought alongside Makenna and gave her their all. Dr. Kays was willing to reschedule his family vacation when she arrived 3 weeks early. They sat bedside with us several times in the middle of the night, left family dinners abruptly to race to the hospital, and were there for us when we needed reassurance or asked for things to be explained again.

At 28 days old, on November 2nd, Makenna came off of the ventilator, and we were finally allowed to hold her for the first time! At that moment, I said I hoped she would be home for Christmas. The ARNP and nurse in the room reminded me that she still had a long road ahead and to shoot for Valentine's Day instead.

Makenna spent several weeks in the hospital - weaning from the ventilator, medications, and learning to eat. She had her share of scary days, and at one point her good lung collapsed from having to work so hard. But she continued to fight. Much to everyone's surprise, at only 42 days old, she was strong enough to come home on November 21st, just as Dr. Kays predicted! Of course his prediction didn't take into account being born 3 weeks early! No one could believe it. She had nurses stopping by her room often just to see her quick and incredible recovery. Many even called her the miracle of the NICU. She went from being one of the more severe cases they had had and the sickest baby in the NICU, to going home in just 6 weeks! Amazingly, she would not only be home for Christmas, but Thanksgiving too! All thanks to their gentle ventilation techniques and minimalistic approach to her care. Sadly, her exit MRI showed significant brain damage from ECMO. They said she may never walk or talk, but of course Dr. Kays had hope. He said he believed that one day she would run into our arms and tell us she loved us. Once again he gave us hope!

In the months following discharge from the NICU, we learned that she developed hydrocephalus from ECMO and had a cyst in her brain the size of a ping pong ball. She has had two brain surgeries, therapy four times a week, and had to return to the hospital 17 times in her first 18 months (twice by ambulance and once by jet). Through it all, Dr. Kays and Joy were by our side. Their care didn't end when she left the NICU. Dr. Kays attended her brain surgeries and placed the shunt tubing in her abdomen himself and Joy visited with us during surgery. Anytime she needs to be hospitalized, they meet us in the emergency department, manage her care, calm our nerves, and stop by her hospital room to check on her during her stay. Makenna went through a lot in her first 18 months. But none of it matters, because she had a caring team on her side. She is a survivor!

Now at 8 she is not just surviving, she is thriving! She can talk, walk, and is truly exceptional! She has an advanced vocabulary for her age, is very intelligent and looks just like any other kid. She runs around everywhere, and is one of the happiest kids I have ever met. She has recently even taken on the role of "big sister." We owe it all to Dr. Kays, Joy and their entire team!