Tom’s Story

Tom’s Story

Tom’s Story, by his mum Jo, and sister Sofia

We had an antenatal diagnosis that our baby had Trisomy 21, more widely known as Down syndrome. This was baby number 5, and they might as well have just been telling me your baby will have green eyes. That is how much it mattered. We told everyone, “We are having a baby. Oh, and they have Down syndrome! ”

Our almost 4 year old, Sofia, was so excited. She came to as many of the scans as we could get her to. She would lie cuddling “her baby bump”, talking to her baby, telling stories and singing songs. She was going to be the best big sister ever. On March 18th 2020, at 9:15pm, we left home, with a 30 minute drive to the hospital and a stop off on the way due to labour pains. And at 10:20pm, weighing 6lb 5oz, a perfect Tom Brodie came rushing into the world. Everything was going well!

He was checked over and nothing unexpected found. We should be able to go home soon. Daddy went home, and we were excited to tell everyone but especially Sofia, in the morning. However, monitoring showed that he wasn’t maintaining his temperature and his oxygen levels weren’t stable. Nor would he feed. So the decision was made to move him to the nursery in NICU, so he could be more closely monitored, and they would arrange NG tube feeding.

When he was down there, they found he had an infection (due to his rushed delivery) and the heart scan found a few problems too. When I got to him in NICU, he wasn’t in the nursery! They had moved him into the critical care incubators, where he was already wired up to monitors and oxygen, with a drip and NG tube. The hospitals were already not allowing visitors due to covid, but a few days after he was born, the country went into lockdown.

I managed to meet my eldest daughter in the carpark, and she bought Sofia to see me, and I explained to her that Tom was poorly and we had to stay at the hospital a little while longer. After 10 days in NICU and 2 days on the children’s ward – during which time we managed to get him off the Ng tube and taking bottle feeds, he was maintaining his temperature and his SATS were good – we finally took him home to meet 3 of his siblings (lockdown meant his eldest sister couldn’t come visit).

Sofia was so excited and impatient to get him out of his car seat so she could cuddle him. She sat holding him, kissing him and whispering to him. Their bond was instant. She didn’t (and still doesn’t fully) understand about Down Syndrome. She has no interest in the shape of his eyes or creases in his hand or the big gap between his toes.

To her, he’s Tom, her baby brother and he’s such a cutie. I’ve asked Sofia to tell you about Tom in her own words………

“Tom is my baby brother. He is 1 year old and he has an extra chromosome, which means he learns slower to do things. He was kind of small when he came out of hospital and I first saw him, but now he’s a lot bigger. He likes to pull me in close for cuddles and when I first get home from school, he moans if I don’t give him a cuddle. Sometimes he will ask for kisses and instead he sticks his tongue out. We like playing hidey boo and listening to music and dancing. And he is my little cutie pie x”