Hello. We are Michael and Kayla, the proud parents of Alexander.

Here is our story,

We found out we were pregnant in April of 2023 and could not wait to become a family of 5! All of the appointments went pretty smoothly and all ultrasounds gave us no concern. I was scheduled for c-section December 12th. On December 7th, 2023 my water broke like how you see it on the movies! We kissed our other kids goodbye and told them we would be back in 2 days with their baby brother. Little did we know, our lives were going to change just hours later.

December 8, 2023, I was rolled back for c-section and couldn’t wait for us to meet him. When he came out he had a little cry but it quickly stopped. They kept trying to stimulate him and he would let out a peep before nothing again. The staff kept reassuring us, that because he was a c-section baby, they were just trying to get fluid off of his lungs. After multiple efforts of stimulation and the operating room filling with more and more staff, the neonatologist said, “we think it’s his heart, we need to take him to the NICU to run further testing”

While in the NICU they did an ECHO and an XRAY and it was determined he had a major heart defect called Transposition of the Great Arteries. In order to make it, he was flown to a pediatric cardiac center to put a stent in his heart, just hours old. I had to stay behind while Michael went to be with Alexander. The procedure was successful and allowed for him to be stable until major open heart surgery at 6 days old called Arterial Switch. What was supposed to be a 2-4 week recovery stay turned into 104 days. Alexander’s lungs hemorrhaged after surgery making him very sick. He was in respiratory failure and heart failure, he continued to have one rare complication after another. But he survived it all. A stroke, 3 heart caths, open heart surgery, ECMO, seizures, chylous ascites, fatty necrosis of his incision requiring a wound vac, GI bleed, partially paralyzed diaphragm requiring a diaphragm plication surgery, 2.5 months of intubation, vocal cord paresis, chest tubes, central lines, arterial lines, feeding tubes of all sort, (NG, ND, NJ) daily X-rays, echos, and medications galore. He continued to overcome every single hurdle.

From the end of March 2024 when he was discharged, to October 2025 he was back and forth to the ICU many times. Most of those stays were a minimum of 10 days. October 2025 he had a heart cath that resulted in unexpected findings. He had developed severe pulmonary hypertension. Which then came the news he needed a heart transplant and possibly a double lung transplant. We were given 5 centers, 4 of which were out of state, that we needed to consider relocating to. We had been in limbo waiting to hear back from these heart centers trying to get appointments made and transplant evaluations done. I was constantly calling and checking on statuses but doing this during holiday season made it more difficult to get all the specialists available at one time.

December 30, 2025 Alexander woke up with a scream in the middle of the night, held his breath and went completely limp. I grabbed him and started chest compressions in my arms while I ran across the house to wake Michael up. I got Alexander on the floor and continued CPR while Michael called 911. He was so lifeless. It felt like forever until he took another breath. The 911 operator stays on the phone until EMS and deputies arrive. We got Alexander back right before they arrived to our home and our total 911 call was just over 8 min. EMS quickly got him in the ambulance and took him to the hospital. He had a pulmonary hypertension crisis leading to his cardiac arrest. It was then that the cardiologist got on the phone with these centers to see who would take him. At first, because he was so unstable they didn’t think Texas Children’s would take him but we insisted for them to try for the transfer. Within a short amount of time we got the news that TCH had accepted and were sending their medical jet to Tampa to pick him up. Michael had just went home to get Alexander’s medications when I called him to pack a small duffle bag instead because a jet is on its way and arrived later that night. He went by ambulance from the hospital, out to the tarmac at Tampa International, got on the jet and off to Houston they went. I stayed back to deal with the house stuff (thank you to all the friends and family that came to the rescue in a short amount of time, we will forever be grateful for all the hard work!) and to get me and the kids packed to drive from Florida to Texas with my mom later that week.

When he first got to Texas Children’s he went through a series of testing and stabilization. He had a heart cath that again showed severe pulmonary hypertension. They decided to work him up for heart and lung transplant evaluation. It was then taken to the Medical Review Board where they discuss and vote if they will list him or not. A heart double lung transplant is rare and is hardly ever done. They decided to list him for both and implant a left ventricular assistive device called a Berlin. This helps decompress the left side of the heart by helping it pump more efficiently. The hope is, overtime the lungs will do better since the heart is better supported. This isn’t a quick fix, like 6-12 months of therapy, to see if it will work. He is currently on an extensive list of pulmonary hypertension medication along with all his other heart failure medications.

Alexander is currently listed for a heart and double lung transplant.

We ask that you please share our story and pray for Alexander and our family. He needs a miracle and we know that can happen through prayer. We have witnessed it many times while here in the hospital.

All donations will go towards Alexander’s medical bills, food, gas, daily hospital parking fees, living, and any necessities for our family as we get through this difficult time awaiting transplant.