After a Midnight Dash and Neonatal Liver Transplant, a Sunny Outlook for Baby Matilda
Faced with liver failure less than a week after birth, Baby Matilda’s life depended on a high-risk liver transplant. For mom, Kelly Smith, it was the longest journey of her life.
For Kelly Smith, it was the longest drive of her life: four hours in an ambulance from Syracuse to New York City beside her nine-day-old daughter, fighting for her life.
As the driver tore down I-81, heading south through Pennsylvania before cutting back into New York, Kelly found herself alone, battling thoughts. “Where would we have a funeral? What would we do? How would we get past it as a family?” she recalls now. She thought of her son: “How are we going to explain that you had this sister and now she’s gone? How as a family are we going to deal with that loss?”.
Though she tried to stay positive, like any new mother, she couldn’t help but fear the worst, she says. “That [first] night I didn’t have any hope.”
A week earlier it had been a joyous occasion. After a smooth pregnancy she gave birth to a seemingly healthy baby girl, and in those first few days all seemed well. But suddenly Matilda became lethargic; it was taking more effort to get her to nurse. Then she started throwing up after eating. Assuring herself that it was just new mother jitters, Kelly called the doctor anyway. Take her to the ER, the pediatrician counseled. Neither imagined just how serious the situation was.
Acute liver failure in neonates is so rare that its precise incidence is unknown. It can be caused by a number of factors. And in most cases, it’s fatal.
When doctors at the local emergency room ran tests, that’s precisely what they found: Matilda’s liver was essentially non-functioning. Recognizing the severity of the situation, they sent Kelly—with nothing more than the clothes on her back and the diaper bag she grabbed on her way out the door—to the regional medical center two hours away in Syracuse. After six hours and more tests it was clear the situation was dire. Matilda needed the help of doctors in New York City—and she needed it now.
For Kelly, the experience was surreal: “I just kept telling myself that it was ok, it was ok. But it was a huge shock when we found out it was something really serious,” she says.
Trailing her in the ambulance was her husband, Tyler, mother, and two-year-old son.
Arriving at Mount Sinai, doctors moved swiftly to assess Matilda’s status, initiate life support, and begin the process for possible transplantation. Given her age and the severity of the case, within days she was at the top of the pediatric list.
In the Care of Mount Sinai
Over the ten weeks that followed, Ronen Arnon, MD, head of pediatric transplant medicine, and the rest of the care team took strides to keep Kelly and Tyler abreast of their daughter’s status and also to check in on their emotional wellbeing. For Kelly, in retrospect, it was the little things that made the ordeal most bearable: cups of coffee brought by nurses; “normal” conversations with residents who were around the couple’s same age; and outside the hospital, a “meal train” of food made possible by Kelly and Tyler’s friends. As for their two-year-old son, Kelly and Tyler’s families were fortunately able to look after him in Montana for a few months.
“We were living in the PICU with nothing, not even a toothbrush, and the nurses there really took us in, and the doctors were so kind,” Kelly says. “We felt really good and really taken care of.”
Five weeks after arriving at Mount Sinai, doctors came to the young parents with urgent news: A liver from a recently-passed, two-week-old infant in Michigan had become available. Extracting it would be difficult, and Mount Sinai surgeon Jang Moon, MD, would fly to Michigan to assist. Even if successful, they warned, the risks remained abundant. But with Matilda’s condition deteriorating, it was her best shot at life.
“When the team came to us and said they had a possible match, we both just looked at each other and said, ‘yeah go for it.’” Kelly says of her and Tyler. “It was really clear and obvious that she needed a liver … and she needed it now.”
It turned out that Matilda needed a new liver even more than any of them knew. When doctors successfully completed the surgery, they told Kelly that less than 1 percent of Matilda’s original liver was still functioning and alive.
A Hopeful Outlook
The days following the transplant were harrowing, but with the new liver, Matilda quickly began to improve. After 72 days in the hospital—but only slightly more than a week after the transplant —she was discharged in mid December. Three months later, at time of writing, she is happy, healthy, bubbly and doing incredibly well. She loves to laugh and smiles with every kiss from her big brother, says a thankful mom, Kelly. “I don’t want to say we’re out of the woods yet, but I’m feeling confident,” she says.
Most recently, Kelly started a blog to share the family’s experience and Matilda’s continued recovery. In addition to commentary from Kelly, it features colorful photos of a proud older brother, a thankful dad, and a beautiful baby girl. Recently, Kelly posted about Matilda sitting up by herself for the first time. The pictures of a smiling Matilda, bright blue eyes, blue bow on her head and pink flower on her dress say it all. Of all that happened leading up to that milestone, Kelly writes: “It is nice to think that I can forget about all of that, even for just a moment, and consider her to be a normal healthy baby.”
Months after that harrowing dash to New York City, the thankful mom looks forward to the journey ahead.