PITTSBURGH (KDKA) — Alexandra and Andrew Tutino, a young couple from Corapolis, felt completely unprepared when a doctor diagnosed their unborn baby with down syndrome.
So many questions filled their minds, along with fear and anxiety. But thanks to a specialized Down Syndrome Center at UPMC Children’s Hospital, they now feel lucky to hold baby Roman in their arms.
“I actually kept saying the term ‘down syndrome’ and everybody kept saying I don’t know why you’re even bringing it up,” said Alexandra Tutino. “It’s not a thought in anybody’s mind right now, but for some reason I kept asking.”
A mother’s intuition, she said.
Alexandra and her husband welcomed Roman into the world just four months ago. As a new family of four, they’re learning more each day and chasing around Roman’s 3-year-old sister Norah.
“She is so challenging the down syndrome diagnosis doesn’t even seem challenging,” said Tutino. “She’s been quite a bit for three years.”
After a difficult birth and two weeks of recovery, the family arrived at UPMC Children’s Hospital.
“Magee did a great job with that they were equipped to do, but once we got to Children’s, it changed the game,” she said.
The family met Doctor Kishore Vellody, the medical director of the Down Syndrome Center.
“You can tell that it’s personal and everyone is passionate about this and that goes a long way to put any of our fears that we still had in the back of our minds,” said Tutino.
That’s because it is personal for Dr. Vellody and his staff. Everyone who works at the center has a personal connection to down syndrome, whether that be a child, sister, brother, cousin, etc.
“When my parents found out about my brother 44 years ago, there was no support system,” said Dr. Vellody. “They were told he had down syndrome and the person who told them walked out of the room and they were left alone to go through this and we never want any of our families to feel that way.”
He works to create a welcoming space for all of Roman’s check-ups and medical needs, plus the staff is ready to answer all of mom’s questions.
“Things you didn’t know, [for example] I didn’t know the low tone goes for every single muscle and not just your muscles so the voice box- that’s the reason for the squeaky breathing,” said Tutino.
Dr. Vellody calls it a “club” to make sure parents like Alexandra and Andrew never feel alone.