Our son needs your help.

In January 2018 our son who was just 13 at the time was diagnosed with a Pilonidal Sinus. We was told at that appointment that due to it bursting it was not urgent, this was an error as there was more than one Sinus. As our childs health deteriorated I was on the phone to the hospital weekly to try and rush through his appointment with the admissions team and the surgeons secretary to try and get a date for the surgery, and he was taken into A+E on 2 further occasions. The paediatricians we saw in A+E said he needed to be seen as urgent. Unfortunately all our protests fell on death ears and our son spent 7 months waiting for the operation while every day in great pain and getting more and more unwell due to the infection in his body.




We waited 7 months and our son had his operation a few days after his 14th birthday. After the operation the surgeon came up to visit us on the ward and told us that the damage was considerable the Sinus had travelled 7cm upwards along his spin and 5cm across his back but the damage was so severe that he had to remove all the tissue as far down as his spine, which was visible within the wound. The opening was so large that you could put a man's fist into it. We was told he was in for a long recovery but at least the operation was done and the Sinus was removed, or so we thought. On one of his follow-up appointments we were given the devastating news that it had returned. There was three new tract’s from within the open wound that had been missed on the first surgery and also where the surgeon had put stitches into the lower part of the wound a pocket had formed underneath that as well.




6 weeks later our son had his second operation to remove the extra infected tissue.




The last 13 months have seen our son all but bed bound. He has been unable to walk more than a few steps and has not been able to sit in a chair or on his bed in that whole time. He can only stand for short times and has had to only lay on his front or his side. This in turn has now seen him diagnosed with a slipped disc and a scoliosis of his spin which is positional and also his hypermobility. The reason he has had such an issue is that he also has a disorder called Ehlers Danlos Syndrome type 3. This affects how collagen is formed in the body and causes a lot of issues for him also. It greatly increases the damage the Sinus is capable of doing due to the delicate nature of his tissue. It also greatly increases his recovery time. We have been advised that he may never fully recover.




We had finally got to the point of the wound healing over and the visiting nurses who packed the wound said they would not need to come any more. We were told we were at the last stage of the healing, the knitting of the tissue and the rebuilding of the nerves.




Shortly after this our son started complaining of pain in the area, we took him to our doctor and we discovered a small pin hole along the scar. Within a few days this had grown. To be big enough to put a finger in it and was infected. We are back to square one. He now needs to have a third operation.




We tried to get him seen by a different surgeon than had been dealing with him previously as the relationship had broken down and the care he had received from that team was far short of what anyone would expect. The refusal to expedite his case and leaving him seven months had caused this to become as bad as it has. The relationship got to the point it had to be passed to the official ombudsman and the hospitals chief executive. Unfortunately due to how the child services work we cannot say who will see our child. We cannot ask for a second opinion and the only NHS doctor available is the very same one.




We have tried all avenues to have him seen by an adult surgeon but we have been refused. We were given the money by a family member to have a consultation with a private adult surgeon who has 25 years experience of this type of thing who said that he is without doubt in need of surgery, and it should be done as soon as possible. But he is unable to do it on the NHS due to their rules about all children must go through the system to the children's hospital an hour away and under the same surgical team as before. He cannot be seen in the hospital close to our home which is 10 minutes away. The only option is to have it done privately.




That is why we are asking for your help. Please can you help us to raise £5000 to pay for the surgery and allow for a bit of aftercare. This is well beyond our means and we only want to try and put an end to our sons suffering. It is so hard to see a child in pain everyday not able to even sit in a chair. He has spent nearly 2 years in bed and has missed so much of life already because of this. Aside from that his Elhers Danlos will also be a life limiting condition for him and will give him issues for the rest of his life.




We all thank you from the bottom of our hearts for any help you can give us by donating to the page.







Thank You




Michelle and Carl