PORTSMOUTH– When doctors told the parents of Cohhen Grate that he would be born with Down Syndrome and a heart disorder, they braced themselves for the challenges that they would face. Thanks to help from Scioto County Developmental Disabilities, Cohhen is now three years old and doing great!
“When I was pregnant they sent me to Columbus for additional scans because they said they needed to get new measurements on the baby. So my husband, my mom and dad, and all of us go, and we were just thinking it was a typical appointment. So we get a scan of the baby, and about five or six doctors walked in after the scan and told that he had Hypoplastic Left Heart Syndrome (HLHS),“ said Cohhen’s mother Tedra Grate.
HLHS is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly.
“They also said they wanted to do an amniocentesis because they thought some characteristics showed signs of Down Syndrome. We were all kind of shocked because we’ve never had a child in our family with Down Syndrome and it took us off-guard. We did the amniocentesis that day, and a few weeks later we got a call telling us he would, in fact, have Down Syndrome,” Tedra said.
Within an hour after birth, Cohen was life-flighted to a Columbus hospital and had his first open-heart surgery when he was only four days old. The doctors told her that the outlook was not good and her family should make as many memories with Cohhen as possible because they were unsure what his future would hold.
“There is a three-stage surgery they wanted him to have,” Tedra explained. “But he had pulmonary hypertension with his lungs, and they were afraid to do the next two surgeries because they were afraid he would have a stroke.”
When Cohhen was six months old, doctors told his parents they were going to try to help him get to age two, and then his parents would have to make some hard decisions. He was strong enough for doctors to put him on the heart transplant list, and in January 2021 he was admitted to the hospital to be monitored while waiting for a donor. It took five and a half months but Cohhen got his transplant and was able to leave the hospital in July 2021.
“When I was pregnant, my friend (SCDD Outreach Coordinator Theresa Rowland) told me, ‘when he’s born you get a hold of me’. I had never heard of early childhood intervention or anything. Theresa got me in contact with the people I needed at Scioto County DD.”
Cohen worked with specialists in the SCDD Early Childhood program, which typically ends at age 3. Sometimes, however – and such was Cohhen’s case – a child can remain in the program a little longer to work with them a little longer and bridge the transition to work with a Service and Support Administrator (SSA).
“They have been great. They would come to the house and work with me while they helped him with different therapies. Cohen didn’t walk until after his second birthday, so we worked on trying to get him to stand and walk, and we’ve always had issues with eating,” Tedra said.
“They have been such an asset to the whole family. I can’t tell you how many times we’ve just sat and talked about things. It’s secluding; having a child that has special needs, and then on top of that having medical issues.”
Cohhen is continuing his outpatient therapy with specialists from SCDD, and Tedra said he absolutely loves the program and all of the people.
“It makes me extremely grateful. At first, you see a diagnosis for your child and you get upset or sad. Now he has a great future ahead of him. He has people that truly care for him and that love him. I know that with their help we will make the best decisions for him,” she said.
For more information about the programs and services at Scioto County Developmental Disabilities, call 740-353-0636 or visit online at www.sciotodd.org, and like and follow them on Facebook and TikTok.