Miracle Kids 2022: Alexander Wilson
Logan Davis-Wilson loves being a mother. She and her husband Craig have a 12-year-old named Riley and a two-year-old named Abigail. She was thrilled at being pregnant with their third child. Logan had an uncomplicated pregnancy and required only routine perinatal care. It wasn’t until her water broke that she realized something was wrong.
Requiring Life-Support to Begin Life
The amniotic fluid of the womb is a clear liquid that surrounds an unborn baby. It typically has the appearance of water, and its breaking is the first sign that a woman has gone into labor.
When Logan’s water broke, it was not a clear liquid, but a thick, dark substance. Meconium is a newborn baby’s first poop, which usually passes within hours after birth, but sometimes will pass while still in the womb. Meconium can appear in amniotic fluid at varying degrees; most often, it’s very light and does not cause damage. In Logan’s case, however, it was thick: the highest severity possible, and a danger to the baby if it were to enter Alexander’s lungs.
Logan delivered Alexander at Unity Hospital. He wasn’t breathing when he was born, and it took two minutes to resuscitate him. While he eventually started breathing, it was still difficult for him. It was immediately clear that he had meconium aspiration syndrome, which caused hypoxic respiratory failure, and he was intubated while at Unity to help him breathe. Once he was stabilized, the Golisano Pediatric Transport team picked him up and brought him to the NICU. With significant lung disease, Alexander needed to be ventilated due to his low oxygen levels.
On day three of life, Alexander developed a right germinal matrix hemorrhage in his brain, which is common for babies who experience major stress during birth. In addition to all of these conditions, he developed pneumothorax—which is air around or outside the lungs that compresses the lung and can be fatal. This required placement of a chest tube to get the air pocket out.
At only five days of life, Alexander’s lung disease was so severe that mechanical ventilation was not enough to keep him alive. Alexander was placed on extracorporeal membrane oxygenation (ECMO), a type of life-support machine similar to cardiopulmonary bypass, to do the work of breathing for him. He was transferred to the Pediatric Cardiac Care Center (PCCC) for his ECMO and critical care management. Alexander was admitted to the PCCC by Joseph Kuebler, M.D., M.B.A., assistant professor of Pediatrics in the division of Critical Care and Cardiology.
With ECMO therapy, blood is removed from the body via catheter, oxygenated by a machine, and then reintroduced into the body by a pump. “ECMO was originally developed for adults and has been adapted for pediatric patients by using different catheter sizes,” said Kuebler.
While trying to stabilize baby Alexander before he was placed on ECMO, he developed acute kidney injury and stopped making urine, leading to his body being quite swollen and placing him at risk for sudden death from acidosis and electrolyte imbalances. To treat this, he had procedures to place him on an additional machine to do the work of his kidneys, called Continuous Renal Replacement Therapy (CRRT) on day eight. At this point, Alexander had seven tubes going into his tiny body: two in his neck for ECMO, one in his throat for breathing, another in his chest to treat the pneumothorax, two central lines into his legs to deliver medicine and allow for the CRRT, and one catheter into his bladder to monitor his urine output.
Jill Cholette, M.D., the Gordon Family Professor in Pediatrics, is the medical director of the PCCC and chief of the Alissa Amalfi division of Pediatric Critical Care. She cared for Alexander after he was placed on ECMO and CRRT. She was extremely impressed with his parents during the whole ordeal.
“I have the utmost respect for Logan and Craig. They are very intelligent and understood the severity of the situation. They were real partners with our medical team, and they showed real courage and grace throughout a long and terrifying situation,” she said.
“This is the scariest thing I’ve ever had to do as a mother,” said Logan. “We were begging and bargaining for his life. But the doctors were good to him, they were good to us.”
She missed the things that many people take for granted during a routine birth: hearing the baby cry for the first time, changing a diaper for the first time, those precious snuggles. She appreciated the support and compassion of her doctors and nurses.
“They said we could call them any time, and they meant it. They kept us updated, we were always part of the decision-making process,” she said. “They were good at letting us feel connected to him in any way we could. They did everything they could to keep him functioning. I have no doubt in my mind, if he was born any other place than Rochester, without Strong, he wouldn’t have made it.”
“And then he surprised us…”
For those requiring multiple life-support systems, trying to predict the outcome is near impossible. “No one can see into the future,” said Cholette, “you make your best estimation based on your training and experience, but it’s hard to counsel families. Obviously needing ECMO and CRRT demonstrates the severity of illness, and once you take the cannulas away, you know your patient may not survive. You have to judge the timing just right.”
It was Cholette who supported Alexander through his transition off ECMO and the ventilator when Alexander was ready, and he tolerated it beautifully, according to her.
Alexander was on ECMO for five days. He stayed on CRRT therapy, however, for six weeks because of concerns for his kidneys. “We were planning on his kidneys not recovering,” said Kuebler, “and then he surprised us by peeing one day. We thought he would need dialysis, but it turned out he didn’t.” That was the miracle: his lungs recovered, and then his kidneys recovered.
It was week six at the hospital when the pee finally came, and the family and doctors could breathe a sigh of relief. His brain hemorrhage had also resolved. After spending the first four weeks of his life under deep sedation and muscle relaxation to keep him immobile, and just over two months in the PCCC, it was finally time for baby Alexander to go home. He still needed to take some medications, and uses a nebulizer from time to time for his lungs, but he’s home with his parents and big sisters.
“It’s always satisfying to discharge a patient, and as physicians, it’s commonplace for us, but it’s a big deal to the parents,” said Kuebler. “Even when things are going well, it’s still an overwhelming process for them. We’re thankful that Alexander’s story has a happy ending.”
Home Sweet Home
Alexander now weighs 17 pounds and is learning how to roll over. At the hospital, his thumbs were stuck inward, but now he’s learning to open them and grasp things. He’s a little behind on muscle development, but he’s making progress. He’s eating solid food now, and Logan and Craig have the parental joy of changing diapers.
His big sisters, Riley and Abigail, adore him. Abigail is quite protective of him: an occupational therapist stopped by the house for a visit, and when Alexander cried, Abigail came into the room with her toy wand to ward off the therapist. Rest assured, Abigail’s magical protection caused no harm to the therapist.
With Alexander home and beginning to flourish, Logan has a message for other parents with children in the hospital. “It gets worse before it gets better. I didn’t understand that at the time. It seems like everything is getting worse, but the little things were actually getting better every day. Focus on the little things.” Alexander’s recovery is the best of those little things.