At my 20 week scan we were told that something didnt look right with his heart. Within 72 hours we were in St Michael's with a diagnosis which they said was linked to 22q. They kept saying that we could terminate and go on to have more children which wasn't a option for either of us. After that we would be in Bristol every 3 weeks to see how our son's heart was growing to see if I would be able to have him in our local hosptial or if i would need to be in Bristol. Luckily I could have him in our local hosptial but there was still a chance that he would needed to he rushed off to Bristol for surgery. They told me to prepare for a blue baby.
When I had him he was pink and oxygen levels were at 92 so after a week we took him home. He has severe reflux and he would never settle.
His health deteriorated rather rapidly whilst we were waiting for him to grow, by 4 months his sats had dipped to 58 and was rushed in for open heart surgery, a day I knew was coming for 8 months, but no amount of time can prepare you for that.
At around 6 months he was diagnosed with moderate to severe hypermobility and hypotonia as he couldn't even hold his own head to feed. We were told he wouldn't walk until at least 3 but with intensive physio he was walking by 14 months.
He is now 3 and every day is full of therapies and specialists etc.