Down Syndrome diagnosis a journey of faith for local family

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Part 2 of 2

With October marking both Respect Life and Down Syndrome Awareness months, Kevin Alviti, president of the Down Syndrome Society of Rhode Island and powerful keynote speaker during the recent diocesan Human Life Guild Day, offers in the second of a two-part Op-Ed a firsthand perspective on the pressures he and his wife faced to abort their baby when doctors determined the child would be born with Down Syndrome.

The greatest gift that my wife ever gave me wasn’t a flat screen television. It wasn’t that signed autograph picture of Rob Gronkowski that’s hanging in my living room. The greatest gift that my wife ever gave me was the ability to process the news, that our baby Natalia would be born with Down Syndrome, on my own at my own time. Not once did my wife ever say to me I am having this baby with or without you. Instead she would come to every single appointment with me, she would hold my hand and would let me ask the most ridiculous questions. I remember beating myself up that I allowed this doctor to get into my head, and she said, “You need to stop doing that. I always knew you were going to come around.” I said how did you know? She said “because every single night you would kiss my belly and tell Natalia that you loved her. I just knew your mind had to catch up to your heart.”

When Natalia was born, we had our challenges. After two-and-a-half days they took Natalia to do an echocardiogram and ultrasound of her heart. They also told us that they would be doing a routine blood test. When the cardiologist returned he said that he had some good news and some bad news. The good news was that Natalia had no heart defects, the bad news was that her lungs didn’t completely inflate. He told us that they would be putting Natalia on an oxygen therapy in the NICU.

The doctor that was taking care of Natalia told us the more concerning thing was Natalia’s white blood count. She explained that her blood work showed white blood count was 76,000 with 47 percent of them blasts also known as cancer cells. A few hours later, the pathology report came back and they told us Natalia had Acute Myeloid Leukemia (AML). They told us that the prognosis would be six months of chemotherapy in the hospital and Natalia would not be allowed to leave.

That night I prayed to God like I never prayed before in all my life. I told him that I give up; that I surrender; I no longer assume responsibility; this is all in his hands; it’s all on him; I raise the white flag.

That night was the best night’s sleep I ever got in the hospital. The next morning we woke up and went downstairs before rounds. The room felt different and I asked the nurse that was taking care of Natalia what was going on. She told us that Natalia’s white blood count came down overnight. The doctor told us that Natalia’s white count was now 43,000 with 23 percent of them blasts. I said “That’s great isn’t it.” She said, “Her white blood count should not be coming down, we do not have her on any kind of treatment.” They said they didn’t know what it was.

A few days went by and they transferred us over to Hasbro where they performed multiple tests on the Natalia. They told us that Natalia was born with Transient Milo Disorder (TMD). TMD is only found in children with Down Syndrome and they are born with it. It’s a type of leukemia, and very rare. But that extra chromosome — the thing that the genetic specialist called a burden — would ultimately save her life. Her extra chromosome over time would fix her white blood count and would get rid of the blasts, acting like an internal chemotherapy. A few months after Natalia was born, her white blood count was perfect.

The 21st chromosome is a very mysterious chromosome. A lot of things are based out of the 21st chromosome including cancer, Alzheimer’s and dementia. People with Down Syndrome don’t get tumors like you and I and they very rarely suffer from heart attacks or strokes. So when they asked us if we would sign Natalia up for a test study we agreed. Natalia most likely will never benefit from the test study, but maybe, just maybe, her blood can help with a cure.

I joined the Down Syndrome Society of Rhode Island (DSSRI) in January 2014 before Natalia was born. I never wanted another parent to feel the pressure and negativity from a doctor telling them that they should abort.

I am happy to announce that on April 4 of this year we had a meeting at Women and Infants Hospital where we met with team members from all departments of the hospital, from the NICU, to the social workers, to the person in charge of all the literature distribution for all Care New England. From now on, when a child is born with Down Syndrome or prenatal diagnosis is handed out, the DSSRI informational packet will be handed out to them with our contact information.

There’s a great saying that I just love and it goes: “Down syndrome is a journey that I never expected, but I sure do love my tour guide.”

To learn more about the Down Syndrome Society of RI, please visit, www.dssri.org.