Just wanted to share our story in case it helps anyone, we're in Leicester, England. Sorry it's a bit of a long one!!
My little Toby was born at 16:17 on 17th June 2016, he was a healthy 8lb 9oz ☺️ he fed well over night and was very quiet and laid back.
At 9:30 the next morning he was sick green bile and immediately rushed to special care for an X-ray with a suspected blockage, which it confirmed!
We we transferred to the Leicester Royal Childens ward where we stayed for a week, he was tested for Hirschsprung's but the results took 3 weeks so we were taught how to do washouts and sent home whilst we waited for the call. When it was confirmed I was devastated and then scared myself to death reading horror stories on line! I put a plea out on fb to all my friends to see if anyone had any experience with HD, low and behold I was introduced to 3 people who I asked lots of questions which helped me understand what my tiny baby would go through in life!
On 4th August, the day I was dreading, he had his pull through operation. Nearly 7 hours away from the ward it was over, he had 20cm removed and went as well as expected.
He did his first poo 15 hours post op and was feeding well and we were discharged 3 days after.
The first 12 days were fantastic, he was pooing for England, then on day 13 he was blowing up with air just like before the op. We had to start dilations to stretch the scar tissue which help him pass the air.
Since then we've had one more trip to the hospital, he is breastfed and would only poo once a week so he's been prescribed suppositories to make sure he goes everyday, also we do sometimes have to pass a catheter to release his air when he struggles or stimulate him to push the poo out.
Despite all this little one has been through he's such a happy, cubby baby who amazes me each day!
I am a mum of three precious children, one suffering from Hirschprung Disease...wanting to connect, share, support and make a difference.