A Year in the life of a child with Hirschsprung's

Matthew was born full term, and there were no complications during pregnancy. Within hours of being born he was taken to ICU as he was very sick, and was operated on when he was 24 hours old.

The reason for the blog is to try to raise awareness of this disease. There are many midwives, nurses and doctors who have not heard of the illness, and it is important that we make as many professionals as possible aware. We also would like to give an idea of the stresses and worries that this illness can bring, together with the hope that our story may also be of interest and give encouragement to other families.

We will post a month each day and we hope you find it interesting. The last twelve months have been the worst in our lives, but you will be pleased to know we do have a very happy and healthy little boy at the time I write, he will be 4 at the end of January.

December 2009

The start of the month and Matthew’s stoma looks like it is prolapsing again, we go to see the surgeon, and he asks us to try to manage it at home, and bring him in if it gets any worse. At this point it is approx. 3 inches long, but the colour is OK and it is working. He wants time to discuss with Dr Levitt in America and decide what to do. The surgeon feels that constantly repairing it is not the right way ahead, and we should be looking to operate and do the pullthrough. Wow, our heads have very mixed feelings. Great to have a pullthrough, but fear as we know the possible negative problems that can come with it too. Our heads were not prepared for this operation just now, we though it would be when he was about 4 or 5 years old. There was also to be a discussion about the type of pullthrough, our hospital intended to do the Duhamel type and we wanted the illeoanal pullthrough to be considered, as preferred by Dr Levitt in America. This method removes all the HD, and does not provide a pouch inside the body to hold the stool.

We go home and await news, it seems that they would like to do the operation on the 8^th January, and we need to urine train Matthew beforehand. George our great surgeon said “you should manage that in a week or so!” So, we go home and put up the Christmas decorations and settle ourselves into the idea. I am an emotional wreck, I can’t stop checking on his stoma and that the length is OK. Both Ian and I know that the chances of a prolapse are always with us, but hope for the best.

The normal day to day life continues, and we go through the frustrations of Matthew’s bag leaking, and changing it. This happens again and again, and again. It is an added stress when you really don’t want to do it, in case you see there is something wrong! As there is no one else at all who changes Matthew’s bag it means that our life is governed by the bag. We can’t go out as a couple, one of us always has to be with him. If we add this to Matthew not sleeping at night, and waking up for milk every few hours, it means that we don’t go out in the evenings at all either. I must say, we don’t complain much about that, I guess that is because we are both 50 and have done a lot of our going out in our younger days!

I don’t have to worry for long, on the 3^rd December, the stoma does prolapse and we head to the hospital by ambulance, again. He has the stoma repaired and we have the usual wait and worry about his gut starting to work. All goes well, and we are back home at the end of the week. Sheer relief, we can now enjoy our Christmas without trying to keep the stoma from prolapsing.

We go down to Cambridge to see Ian’s brother and his wife, and have a lovely long weekend, and a rest. All seems well, and we have a lovely Christmas, with dinner at our house and all seem great, Matthew loves his presents. The pullthrough has been deferred until the future as Matthew’s gut can’t be handled again so soon after the last operation.

The day after boxing day, we pack up and go to Wales with my family for a few days, it was fantastic! As the weather was so bad, snow was forecast again for Wales and will did not want to be stuck there in the snow, so we came home a day earlier than planned. Thank God we did. We came back on Dec 29^th and Sara and Gareth are coming over with Jacob from Wigan to see us at home. Matthew is very excited!

Here we go again, the very bad prolapse now, his stoma is huge, long and going black. We phone 999 and the ambulance comes. It arrives just as Sara and family arrive. We say hello to them, and get into the ambulance.

As soon as we arrive at A & E our surgeon, George comes to see Matthew. His face says it all, he walks out and goes to find a theatre space urgently for Matthew. Matthew is screaming in pain, and we are sick with worry. A registrar stays with us all the time we are waiting for theatre, his stoma gets longer and more and more black. Matthew looks so pale, ill and in so much pain. His guts are literally coming out of his tummy and dying as we look.  Ian and I try our best to keep ourselves together, we know that this is bad. Within 2 hours he is in theatre, and a space is made in HDU for after the operation. Our surgeon can’t do the operation as he has a clinic, but he is up and down to the theatre checking what is happening.

Ian and I are in HDU waiting for any news, 3 hours later the surgeon comes to see us and says Matthew has lost another third of his small intestine, and only time will tell how well he will cope. We look at him, so pale, and hooked up to all the equipment we have become so used to.

This is not the end we wanted to the year.