Jacob's Story

Jacob was born on 10th September 2013 and we came out of hospital after 5 days as I had an emergency C-section.

On day 9 he started throwing up milk. We didn't really think anything of it until another day went by and he could no longer keep any fluids down and went all floppy and unresponsive. We called 111 and an ambulance came out and took him to Frimley Park hospital where we stayed for a few days while they were trying to get him to keep fluids down.

With this not working he was transferred to a specialist unit where they did tests and then decided to send him to St George's, London as Southampton didn't have any beds free. When we arrived they did a huge 3 hour flush out on him as he was so blocked up. The next day they took him down to do a biopsy where it came back positive for Hirschsprung's Disease  (HD).

With these results we sat down with Jacob's consultant to discuss HD in more detail and were advised about how to best manage his condition before and after the surgery that he would required.

They wanted him to grow a little more before his surgery so we stayed in hospital for a further week while myself and my husband got trained how to do anal flushouts at home so he could carry on feeding. We had to do this 3 times a day for a week while waiting for surgery to be booked in.

We got his date though and went in for the surgery when he was exactly 1 month old. They took him to theatre to remove the parts of his colon that didn't have formed ganglion cells. These are the bits that make poo process and push though poo. The surgery was 6 hours long, during which 25cm of his colon was removed. They were able to join up to the rectum so he didn't have to have a stoma bag.

The recovery was rough for all of us. Once home it was very tense looking out for signs of enterocolitis, this is an infection of the gut that is not good at all. After leaving the hospital we were told that our surgeon would be leaving St George's so at this point we decided to make the move and had a referral to Southampton Children's Hospital as it is much easier for us to get to for problems and routine check ups with our fantastic consultant Mr Stanton.

 

Once we had our first meeting he was checked thoroughly and it became apparent that after his surgery, where the wound had healed, the scar tissue had made his rectum to tight and small for a child of his age so he was put forward to have his rectum stretched under general anaesthetic as it would be to painful for us to start doing the stretches at home. Once the surgery had been done we got sent home to carry on improving the size of his anus with a small solid tube to be inserted twice a day until our next visit to see Mr Stanton. After going up a few sizes Mr Stanton was happy with the results so we could stop the horrid daily screaming from our baby boy enduring this pain.

 

Nappy rash was and still is a big battle as his poo is very soft and watery. But that is the way we want it so he doesn't get constipated and blocked up as this is when infections can occur. The daily struggle of keeping his bottom from becoming so sore it blistered, is so much easier now he is potty trained.

But we got though it all, albeit with a few trips to A&E. This was very frustrating as they do not know much about HD, so we got to the point where I would just drive to Southampton Children's Hospital to see the team on the  G4 surgery Ward (they are amazing).

Jacob has been very lucky to only have a few hiccups along the way. After his major surgery when he was a month old up until 1 month before his 3rd birthday he got away without getting enterocolitis. I noticed he was a bit off for a few days but just keeping a close eye on him. It got to the point I just thought "no I’m not happy this isn’t normal" so made a phone call to the team in Southampton, after hearing all his symptoms they wanted to see him, so we packed a bag and off we went thinking "I’m sure it’s nothing and we will be back within the day". Unfortunately not, when we arrived they checked him all out and after doing a full set of bloods confirmed he had an infection of the gut (enterocolitis). He was then put on antibiotics and fluids via an IV line to keep him well hydrated and clear his infection. He had a bowel washout to make his tummy feel more comfortable. After 5 days we were given the all clear to come home on a supply or oral antibiotics to make sure the infection was completely cleared.

Before our more recent trip to hospital Jacob was on a daily does of 5ml senna liquid before bed, however since his scare in hospital he now has 10-15ml senna before bed to make sure he is having a very good clear out daily so no old nasty poo is left behind.

It's not been easy but with the constant support of Southampton and the charity support group it has been OK as you know you are not alone.

Jacob is now fully potty trained (apart from the occasional bad days) this was a very interesting and longer process than normal as the bit that gives you the sensation to go to the toilet Jacob no longer has so it is a bit of a waiting game on the loo twice a day. But he is doing ever so well and taking it in his stride. We had a few issues with poo skids in his pants due to stools being that bit softer but this is not something he can help, after speaking to other mums they said it will stop in time fingers crossed, it has for the most part but on days he is a bit under the weather he may have a few problems with his gut.

But in the grand scheme of things and all he has been though he is a thriving happy healthy active 3 year old little boy.   

We have now added to our family with a happy healthy little girl who seems all A ok at moment and free of HD long may it continue.

     Terri

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