CANTON Matilda M. Smith is a chubby-cheeked baby who sits up, tries to crawl and smiles widely when shes getting attention from her 3-year-old brother, Parker.
But her little life didnt start out so bright and sunny.
Just nine days after her Sept. 21 birth at Canton-Potsdam Hospital, Potsdam, it became clear that Matilda was a very sick little girl. Her parents, Kelly E. and Tyler J. Smith, became concerned about their babys lack of interest in nursing and her excessive sleepiness. But she was gaining weight, which alleviated some of their worry.
However, when Matilda started projectile vomiting at about a week old, they headed to the emergency room at Canton-Potsdam.
Physicians there determined she was jaundiced and probed further to find the cause.
As soon as we got the bloodwork back, it was obvious it was her liver, Mrs. Smith recollected. They could tell the jaundice was caused by her liver shutting down, but they didnt go into detail about how sick she was.
Without hesitation, Mrs. Smith and 9-day-old Matilda were on their way by ambulance to the pediatric intensive care unit at Upstate Medical University, Syracuse. Mr. Smith followed in his vehicle, joined by his son and his mother-in-law.
Once there, Matilda underwent more bloodwork and an ultrasound. She received fresh frozen plasma to help with liver function. The liver produces the material thats necessary for blood clotting, which means a failing liver could lead to hemorrhaging.
At this point, it was obvious their babys condition was very serious, Mrs. Smith said.
You could see she was going downhill very fast, Mrs. Smith recollected.
Fortunately, Mount Sinai Medical Center, New York City, had a pediatric liver transplant team that was available to accept Matilda. Again, Mrs. Smith accompanied her newborn in the ambulance while Mr. Smith made the trip to New York City in his own car.
Once there, a CT scan showed evidence of brain swelling, and physicians worried about hemorrhaging. The baby was hooked up to feeding and breathing tubes.
The Smiths were grateful for the number of specialists at Mount Sinai who became involved, including a genetics team, an infectious disease team and a neurology team.
They were all kind of baffled that she never had a fever and was born fine, Mrs. Smith said.
Her treatment included double-exchange blood transfusions, which provided her with fresh plasma. She also was placed on the transplant list. The most important factor was finding a liver that was small enough for Matilda.
We became close with a lot of the doctors and nurses, Mrs. Smith said They took us under their wing.
The couple had to consider that liver transplants have only a 40 to 50 percent success rate.
We were terrified if we made the wrong decision, it would tear us apart as individuals and as a family, Mrs. Smith said.
But they also knew Matildas condition was not improving. Her blood pressure was extremely low, and she had a nosebleed that wouldnt stop for several hours.
The Smiths also turned to their deeply rooted Catholic faith for support. They asked family and friends to pray for their newborn.
Mr. Smith, an assistant civil engineering professor at Clarkson University, Potsdam, said his co-workers were very supportive.
I prayed for strength and acceptance. I prayed for peace of mind and guidance. I prayed for the medical staff and anyone who came in contact with Matilda, Mrs. Smith said.
She said she did not pray for a new liver for Matilda, because she was heartbroken knowing that would mean another mother was losing her baby.
Mrs. Smith said she was saying the rosary when the news came that a liver would be removed from a 2-week old baby from Missouri who died in the hospital.
On Matildas six-week birthday and All Saints Day, a priest visited the hospital to bless her. At the same time, the hospital received a call that the surgery to remove the liver from the donor baby had been successful and the transplant would take place within a matter of hours.
On Nov. 2, a team of about 12 doctors performed the six-hour microscopic surgery at Mount Sinai. Surgeons discovered that only about 1 percent of Matildas liver was functioning.
When she came out of surgery, instead of being stitched, Matildas abdomen was wrapped in gauze and plastic that looked similar to Saran wrap. The procedure had gone well and Matilda was placed on anti-rejection medicines.
Mr. Smith said the physicians best guess is that Matilda suffered from neonatal hemochromatosis, which essentially is acute liver failure.
The couple stayed in New York City for the next six weeks while Matilda recuperated, returning to Canton on Jan. 21. So far, the transplant is considered a success and, except for a cold, Matilda has remained healthy.
The family is careful about preventing Matilda from getting sick because her immune system is compromised. They ask visitors to use hand sanitizer and remove their shoes. They avoid taking her to places with large crowds.
Friends in the north country have dropped off meals and helped with the couples older son. Every two weeks Matilda has bloodwork done, and she will be monitored closely for the next five years.
She is developing well and reaching normal milestones for an 8-month-old.
We have been very blessed, Mrs. Smith said.
Mrs. Smith, a reading specialist, is keeping a blog about her familys experiences at www.cloudydaygray.com.