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Canton baby progressing after liver transplant

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CANTON - Matilda M. Smith is a chubby-cheeked baby who sits up, tries to crawl and smiles widely when she’s getting attention from her 3-year-old brother, Parker.

But, her little life didn’t start out so bright and sunny.

Just nine days after her Sept. 21 birth at Canton-Potsdam Hospital, it became clear that Matilda was a very sick little girl.

Her parents, Kelly E. and Tyler J. Smith, became concerned about their baby’s 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 CPH.

Physicians there determined she was jaundice and probed further to find the cause.

“As soon as we got the blood work 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 didn’t 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 Center, 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 to help with liver function. The liver produces the material that’s necessary for blood clotting, which means a failing liver could lead to hemorrhaging.

At this point, it was obvious their baby’s condition was very serious, Mrs. Smith said.

“You could see she was going downhill very fast,” Mrs. Smith recollected.

Fortunately, the 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 cat scan showed evidence of brain swelling and physicians worried about hemorrhaging. The baby was hooked up to feeding and breathing tubes.

The couple was 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 was also 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 only have 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 related.

But they also knew Matilda’s condition was not improving. Her blood pressure was extremely low, and she had a nose bleed that wouldn’t 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, 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 noted that 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 praying the rosary when the news came that a liver would be removed from a two-week old baby from Missouri who died in the hospital.

On Matilda’s six-week-old birthday and All Saints Day, a priest visited the hospital to bless Matilda. At that same time, the hospital received a call that the surgery to remove the liver from the donor baby was 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 Matilda’s liver was functioning.

When she came out of surgery, instead of being stitched, Matilda’s abdomen was wrapped in gauze and plastic that looked similar to Saran wrap. The procedure had done 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 back 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 couple’s older son.

Every two weeks Matilda has blood work don,e 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 family’s experiences on the website:www.cloudydaygray.

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