PORTSMOUTH — After more than 20 heart caths, a heart transplant, and other heart surgeries, two-year-old Cohhen Grate has overcome many health related difficulties since he was born.
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Cohhen was born with Down Syndrome, Hypoplastic Left Heart Syndrome (HLHS), and Pulmonary Hypertension.
Tedra Grate, Cohhen’s Mother, said she found out while pregnant Cohhen had Down Syndrome.
“It threw us for a loop because we had four other children who were healthy and fine,” said Tedra. “They told us by the looks on the screen it was possible he had Down Syndrome and they wanted to do an amniocentesis where they saw he had a heart issue as well.”
Tedra said the doctors were not sure how long he would make it.
“They said he was going to be born with HLHS which is pretty much half a heart and they wanted us to terminate the pregnancy because I have already five and a half months along, I had already felt his kicks, I knew they wanted us to do it to save the heartache and there wasn’t an appointment that went by where they didn’t give us books about grieving,” said Tedra.
Tedra said Cohhen was their rainbow baby.
“We had a miscarriage before we had him and our kids are so much older that we didn’t think we could have anymore and we found out we were pregnant with him and were so excited but come to find out everything that was medically wrong with him,” said Tedra. “I wouldn’t trade him for nothing in this world now.”
Cohhen had his first heart surgery at four days old and received his heart transplant before the age of two.
“We were originally told he wouldn’t be eligible for a heart transplant because he has Down Syndrome but they decided to approve him once he got many tests done,” said Tedra. “His oxygen levels were down in the low to mid-sixties so they decided to bring us in on January 14 of last year and we got the call May 24 saying they found the perfect heart for him.”
Tedra said the transplant did not go as planned.
“His heart actually stopped working so they had to do chest compressions and rush him back down to put him on the ECMO machine which is basically life support,” said Tedra. “To say it was hard to watch him like that was an understatement.”
Tedra said Cohhen was on the machine for close to a month but the doctors told the family they did not want to go past a week.
“By the grace of God, everyone’s prayers, and the amazing doctors at Children’s, they were able to get him stable and take him off the ECMO machine,” said Tedra. “We were in the step down unit for about three weeks so our total time in the hospital was around five and a half months.”
Tedra said the doctors didn’t expect him to make it through.
“They never told us during the time we were watching him go through all of this that they didn’t think he would make it but the doctors and nurses came to me after and said if it wasn’t for God he wouldn’t be here,” said Tedra. “Being a mom, you believe of course in the power of prayer, then a doctor actually tells you that and you don’t realize the severity of it.”
Cohhen came home from the hospital with a Remodulin which stayed on him for three months and once removed Tedra said he began walking.
“The week after his second birthday he started walking which is great because they told me most kids with Down Syndrome start walking around two but you also have to account for the months spent in the hospital too,” said Tedra. “He is doing really well, he walks, he is full of energy, and is a very loving little guy.”
Cohhen is tube fed but Tedra said he is working on feeding through the mouth.
“We are working on therapy with Watch Me Grow for feeding, he’s doing great with walking, we are working on speech, he knows quite a few words but just to help him with his everyday life,” said Tedra. “He is a great big brother, he is also an uncle, and our big kids absolutely adore him.”
Tedra said the Scioto DD has been a great support to their family.
“Cassie and Theresa would call and asked how he was doing, how we were doing, and just making sure we knew they were still there and they’ve recently started coming back into the home,” said Tedra. “We also have Logan who is working with the speech and the feeding.”
Tedra said with living in a small town, she knew very few parents who had children with Down Syndrome.
“They have been a huge asset and recently I joined a group called Bob’s Memorial Project and they have been great,” said Tedra. “He is immunocompromised so we can’t go out or be around people so it’s like we live in a bubble and having people out there reaching out and to know there are other families who know what you’re going through.”
Tedra is now on the Board of Bob’s Memorial Project.
“It’s been great, we had our first meeting over video call because I can’t take Cohhen out of the house but there was a little girl who was probably two or three and Cohhen wouldn’t talk to anybody until he saw her and it was so cute because they were just waving at each other and he was blowing kisses,” said Tedra.
Tedra said Cohhen was a miracle.
“I am thankful for people like the DD and Watch Me Grow for making resources available and that they truly care which I appreciate so much and people aren’t even family who have reached out saying they are praying for Cohhen,” said Tedra. “It makes you realize the world isn’t as bad as what it seems.”
Reach Darian Gillette at (740) 353-3101 ext. 1931, or by email at [email protected]
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