Our six-year old son Alby became ill in June 2015, with what seemed like a tummy bug. He was still vomiting (mostly bile) and in severe pain with a bloated tummy three weeks later . The doctors assured us it was just a bad tummy bug, but our gut instincts told us something else was going on.
We set about talking to people, searching the internet, trying to match up the symptoms with anything that popped up on our screen, or was talked about in amongst our friends, family and colleagues. But nothing added up.
Six weeks down the track, Alby was finally admitted to the Children’s Ward at Hawke’s Bay Hospital, following a doctor’s referral and consultation with a paediatrician. He underwent a variety of tests/scans and was discharged the next day, with the doctors still scratching their heads.
Another four months had passed, with several more doctors visits, and Alby was not improving. He was still vomiting and in severe pain, distended tummy, and extremely lethargic. We felt helpless, frustrated and at our wits end.
In November 2015, the pain was so severe that it meant another trip in the ambulance to the hospital. This time, an abdominal x-ray revealed a complete bowel blockage. He was flown to Wellington, 350kms away from home, and underwent urgent surgery where they removed his ascending colon and appendix. This would explain why he had been in so much pain, but we were all at a loss, as to what could have possibly caused it. It was a huge relief to us, when it was discovered that the blockage was just simply faeces, and not something sinister. But why this happened, was still a mystery.
He recovered from the surgery and went home two weeks later. Within days, he was back in Hawke’s Bay Hospital, vomiting, distended tummy, unable to eat and in severe pain. The symptoms remained, despite the surgery and he was rapidly losing weight, literally ‘wasting away’. Meanwhile, back in Wellington, his surgeon, along with the medical team, were still trying to establish what caused the initial blockage, knowing he had been sick for months prior to the surgery. They were still awaiting tests results from the initial biopsies taken during his surgery.
Alby was transferred back to Wellington Children’s Hospital, where a PICC line was immediately inserted to receive TPN (intravenous nutrition). He also underwent a multitude of tests and scans, which together with the results of the biopsies, revealed that he had neuropathic Intestinal Pseudo Obstruction. Although very rare, his surgeon had experience with this disease in patients when he was working in the UK, but with the majority being infant babies. We had never heard of such a disease, and could not understand how or why this happened to our son. What we did know, is that it looked like the damage to the nerves may have been caused by a viral infection, consistent with the biopsy results, and following a second opinion of those results. However, Alby was tested for any primary possible cause, all of which came up clear. The question remaining was whether or not the damage was temporary or permanent. To this day, we still do not know.
Within a week, Alby underwent surgery for a planned ileostomy, to relieve the extreme pain he was in, due to lack of motility in his bowel, and in the hope that he could start eating again.
A few days after the surgery, Alby was still unable to eat . He continued to have pain and vomiting, so the decision was made to insert a tube for continuous feeding. It was a very tough three days, as he did not tolerate the feed easily. He would wake up suddenly from his sleep and vomit, with severe pain. He was put back on TPN, and a few days later, tried again with the continuous feeding. This time was more successful, and he was able to tolerate very small amounts, slowly increasing over the next few days. His condition continued to improve and he was putting on weight. The relief was enormous, as we did not know whether or not he would get this far, and we were fearing the worst – being completely TPN dependent.
After nearly 5 months of being in hospital, Alby was finally weaned off TPN. His PICC line was removed, and he was able to go home to Napier, with his feeding pump and various medications. It was another 2-3 months before he was able to go for a whole day with little or no pain, and attend school five days a week.
He is coping really well with his stoma and is still receiving continuous feeds via NG tube. He is able to eat small amounts orally, and continues to be on medication for motility, and when necessary, for pain. Although he gets tired easily, he has learnt so well to adapt, and work around that. We are so very proud of our brave young man.
At this stage, we do not know what the future holds for Alby’s health, so we are making the absolute most of this time while he is well, and able to do the things that other children his age are doing.
We are very thankful and relieved to have found PORT Charity, as they has given us so much hope that one day a cure will be found for all the sufferers worldwide, of this terrible and debilitating disease. PORT have also provided us with such incredible support that we so desperately needed. And we will continue to support them in future and be a part of their charity.