Milestone Moment

My amazing son who I'll call J, is nearly three, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...

Well, we've done it! On Tuesday, I reached the milestone when everything went crazy in my pregnancy with J. 29 weeks and one day, to be exact. And this time around, it was just a normal day.

29+1 last time was a day I will never forget.

Having had a relatively normal pregnancy so far, I was in hospital complaining of a lack of movement from the baby and odd abdominal sensations. I had been kept in overnight, monitored and examined, given steroids, and told I could go home that evening once I'd had a scan.

My husband, mum and dad were all there, and mum had already got the chicken marinating for our dinner in tupperware in their car.


As soon as the scan started, and the sonographer went quiet, I knew something wasn't right.


Over the course of the few hours that followed, it emerged just how dire the situation was. The scan showed a rare condition I'd never heard of called hydrops fetalis: fluid was inside our baby's chest, crushing his lungs, and there was also fluid in his scalp and too much fluid around the baby.

No-one knew why this had happened (we later found out it is quite common with the genetic condition that my son turned out to have).

A few hours later, a doctor came and told us it was not good news. She could not give us a chance of our baby surviving.

I had to stay in hospital overnight again, but because my baby was so ill and I was in shock, the midwives allowed me to sleep on the labour ward where I could have a room to myself.

Needless to say, I barely slept. My mum stayed with me all night and also didn't sleep.


I didn't feel like a pregnant woman anymore. I saw the women in labour around me and no longer identified with them.


At eight o'clock in the morning, a consultant visited and put his hand on my arm. He said how sorry he was and that I was being so brave. It only convinced me that this was very serious.

Over the days that followed, we had more scans with ever more senior doctors, and finally at another hospital they operated on my baby inside the womb to try to drain out the fluid from his chest.

It was only partially successful, and weeks 30 and 31 of my pregnancy were spent falling into depression.

Internet research told me hydrops was usually fatal and I thought our baby would be stillborn or die soon after birth.

Labour was staved off by the surgery for those two weeks, but at the end of my 31st week, back in hospital, I felt physically odd again and had a bleed.

A few hours later my waters broke and four hours after that, J appeared in the world. I saw him for a brief few seconds and then he was taken to intensive care; I didn't get to see him again that day or touch him for a week.

So you can imagine the relief I feel that this time, in my 29th week, nothing has happened!

I will be nervous until I get past the next milestone of 32+0, the day J was born, and I'll probably still be nervous until I get to term.

But for now, doctors tell me all is normal.

Click here to read previous columns from The Secret Diary of a Special Needs Mum.