"He said Makenna 'wanted to purchase the whole CDH package'." - Makenna's Story
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 daughters' life. We thought a surgeon of his caliber would be untouchable for regular people like us. We figured he would be too busy and too expensive for us and our little girl, 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 more mild 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 there after she challenged the team and presented them with some complications unlike any they had seen 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 the surgery to fix her diaphragm. We learned she did in fact have severe rCDH. She had a little 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 along side 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 in the middle of the night several times, 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 vent 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.
She 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 the 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 pingpong 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. She's went through a lot in her first 18 months, but none of it matters because she had them on her side and she is a survivor!
Now at 2 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, looks just like any other toddler, is running 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!
You can read more about Makenna's journey before, during, and after CDH here: