Short Bowel Survivor & Friends

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Aaron

 
 Aaron’s Story  - by his mum Krista

At my 12 week scan Aaron was diagnosed with Gastroschisis. His Bowel had formed outside his body through a hole in his abdomen. I was referred to St Mary’s hospital in Manchester for specialised antenatal care during pregnancy. This included regular scans to check the blood flow to Aaron’s bowel, make sure no other organs were on the outside, the fluid surrounding him and that he was gaining enough weight. Crucial information they needed for when Aaron was born. Staff at St Mary’s explained to us that Aaron would need to go to theatre 12- 36 hours after birth to put the bowel back inside. They also told us he would need to be in hospital on their neonatal special care for 3 weeks to 3 months to establish feeding and that if a blockage occurred he may have to go to theatre to remove it. At no point was the chance of Short Bowel Syndrome or the condition itself mentioned to us throughout my pregnancy.
When Aaron was born on the 12th June 2008 by natural delivery and weighed 5lb 10oz – a good weight for a baby with Gastroschisis. However immediately on examination it became apparent that there was a much bigger problem than first anticipated. Since my last scan the hole in which the bowel was escaping had tried to heal itself, cutting off the blood supply to the bowel causing it to die.
Aaron was immediately rushed to theatre where surgeons spent hours trying to remove dead bowel and connect what was left to a blood supply. When the operation was complete the doctors came to see us and explained that Aaron was in a critical condition and the future for Aaron was unclear due to the amount of bowel his body had lost and the pressure put on his body by hours in theatre meant Aaron was unlikely to survive the weekend. The doctors were at a loss as to what to do to save his life.

Aaron was however on strong pain killers and sedated in order for him to rest. He was on a ventilator and had a central line into his jugular vein to artificially feed him TPN which would feed him all the nutrients and fats he would normally absorb from milk. TPN has serious side effects such as line infections that could potentially result in death. Aaron’s body had low immunity and was not strong enough to fight infection as a normal body would have.
On Saturday 14th June in the morning we were introduced to Mr Morabito. Another surgeon he told us about him and the surgery he had done before and that he had an Intestinal Rehabilitation Programme running in Manchester. The programme was a long term method of treating short bowel syndrome without a transplant. It consists of a recycling process to stretch the bowel and artificial feeding to keep Aaron alive. This was done through a central line sited in his jugular vein and most importantly, surgery to lengthen the remaining good bowel. He explained that he would need to take Aaron back to theatre the following day and assess the amount of bowel he had left. Even if he had as little as 5cm, Aaron could be entered on to this programme that could essentially save his life.

Aaron went to theatre as planned and we received the good news that Aaron had 10cm of usable bowel and 9cm of uncertain bowel that was left as a small stoma on the front of his body. A very small percentage from the original 250cm babies are born with. He was able to be entered into the rehab programme with renewed hope of survival.

As part of the programme Aaron had to have 2 tubes inserted into his stomach and his bowel. We had to act as Aaron’s bowel for him once he was strong enough to try orally feeding.
A week after theatre Aaron was doing a lot better he was removed from his ventilator and was ready to try and take a small oral feed. To start we fed Aaron 5mls of milk in a syringe once every 5 hours. It seemed like such a small amount but it was a huge step if he could tolerate it. Whilst feeding Aaron we had to clamp the tube from his stomach for a small amount of time before draining his stomach contents and feeding it manually through a syringe in to the tube coming from his bowel in order to stretch it in width. This is known as ‘recycling’.
Aaron’s Story.

At my 12 week scan Aaron was diagnosed with Gastroschisis. His Bowel had formed outside his body through a hole in his abdomen. I was referred to St Mary’s hospital in Manchester for specialised antenatal care during pregnancy. This included regular scans to check the blood flow to Aaron’s bowel, make sure no other organs were on the outside, the fluid surrounding him and that he was gaining enough weight. Crucial information they needed for when Aaron was born. Staff at St Mary’s explained to us that Aaron would need to go to theatre 12- 36 hours after birth to put the bowel back inside. They also told us he would need to be in hospital on their neonatal special care for 3 weeks to 3 months to establish feeding and that if a blockage occurred he may have to go to theatre to remove it. At no point was the chance of Short Bowel Syndrome or the condition itself mentioned to us throughout my pregnancy.

When Aaron was born on the 12th June 2008 by natural delivery and weighed 5lb 10oz – a good weight for a baby with Gastroschisis. However immediately on examination it became apparent that there was a much bigger problem than first anticipated. Since my last scan the hole in which the bowel was escaping had tried to heal itself, cutting off the blood supply to the bowel causing it to die.

Aaron was immediately rushed to theatre where surgeons spent hours trying to remove dead bowel and connect what was left to a blood supply. When the operation was complete the doctors came to see us and explained that Aaron was in a critical condition and the future for Aaron was unclear due to the amount of bowel his body had lost and the pressure put on his body by hours in theatre meant Aaron was unlikely to survive the weekend. The doctors were at a loss as to what to do to save his life.

Aaron was however on strong pain killers and sedated in order for him to rest. He was on a ventilator and had a central line into his jugular vein to artificially feed him TPN which would feed him all the nutrients and fats he would normally absorb from milk. TPN has serious side effects such as line infections that could potentially result in death. Aaron’s body had low immunity and was not strong enough to fight infection as a normal body would have.

On Saturday 14th June in the morning we were introduced to Mr Morabito. Another surgeon he told us about him and the surgery he had done before and that he had an Intestinal Rehabilitation Programme running in Manchester. The programme was a long term method of treating short bowel syndrome without a transplant. It consists of a recycling process to stretch the bowel and artificial feeding to keep Aaron alive. This was done through a central line sited in his jugular vein and most importantly, surgery to lengthen the remaining good bowel. He explained that he would need to take Aaron back to theatre the following day and assess the amount of bowel he had left. Even if he had as little as 5cm, Aaron could be entered on to this programme that could essentially save his life.

Aaron went to theatre as planned and we received the good news that Aaron had 10cm of usable bowel and 9cm of uncertain bowel that was left as a small stoma on the front of his body. A very small percentage from the original 250cm babies are born with. He was able to be entered into the rehab programme with renewed hope of survival.

As part of the programme Aaron had to have 2 tubes inserted into his stomach and his bowel. We had to act as Aaron’s bowel for him once he was strong enough to try orally feeding.
A week after theatre Aaron was doing a lot better he was removed from his ventilator and was ready to try and take a small oral feed. To start we fed Aaron 5mls of milk in a syringe once every 5 hours. It seemed like such a small amount but it was a huge step if he could tolerate it. Whilst feeding Aaron we had to clamp the tube from his stomach for a small amount of time before draining his stomach contents and feeding it manually through a syringe in to the tube coming from his bowel in order to stretch it in width. This is known as ‘recycling’.

At 3 weeks Aaron moved to Pendlebury Children’s Hospital. Here we were taught how to care for Aaron completely including how to carry out his sterile TPN procedure in order for us to do it at home. Things started to move quickly Aaron began to feel hungrier and tolerated bigger feeds his TPN hours decreased to 22 hours a day meaning we could take him off the ward for a while and walk around with him letting him have a little fresh air.

On the 1st august 2009 Aaron went to theatre again to have a new central line sited as he contracted an infection which wouldn’t shift with just antibiotics. Whilst there Mr Morabito decided he would check the 9cm of uncertain bowel. He found that the 9cm had survived well and he connected it to the original 10cm meaning that Aaron had 19cm of stretchable bowel.

Aaron continued to progress well with few minor hiccups such as leaking from around the tubes which caused acid burns onto his skin which we controlled using a waterproof barrier cream. He continued to tolerate bigger feeds and longer clamping times Meaning the amount of TPN he required lessened, also lowing the risk of liver problems due to long term TPN. This also meant Aaron was able to visit home for a few hours in the day. Aaron carried on gaining an expected amount of weight even though compared to a normal child of this age he was tiny.

As the beginning of December 2008 Aaron had a huge set-back. He had contracted a viral infection as well as another line infection. He was vomiting so much he could no longer tolerate water and was placed in an isolation room on the ward. After a day or so Aaron was nil by mouth and back on 24 hour TPN and clear fluids to keep him going. Aaron began to look frailer day by day and had completely deteriorated, he looked worse than ever. We didn’t think that he would make it to his lengthening surgery.

Mr Morabito asked if he could carry on with Aaron’s surgery on the 18th of December, and of course we agreed. We had every faith that Mr Morabito knew what was best even though we were apprehensive as to whether Aaron would be strong enough make it through theatre.

Aaron went to theatre as planned on the 18th of December – it went extremely well not only did our little boy come back with no bags but with 37cm of bowel! We were ecstatic this could well be enough to survive long term with no TPN! Dr Morabito seemed pleased with Aaron and said he had coped well in theatre. Aaron was stronger then we all gave him credit for! I couldn’t wait to hold him when he had recovered without having to worry about tangling or pulling his bags anymore, it was our early Christmas present.

After the recovery weeks Aaron would be ready for the next step - able to start weaning very slowly onto a solid diet increasing his oral intake and lessen TPN even more! On Christmas day Aaron was allowed to come home and see everyone for 3 hours this was a long time considering it was only a week since surgery.

Over the next 6 months every aspect of Aaron seemed to speed up, his health although he had a few setbacks and his development he was smiling and laughing a lot more. Aaron passed a lot of stools each day compared to that of a normal baby but that was to be expected to say the least. He was on a strict weaning diet that consisted of no gluten, no dairy, no lactose and no egg so he started off quite limited! Luckily for us Aaron was willing to try all sorts of foods, tastes and textures and his appetite increased tremendously. Aaron still had daily blood tests taken and was monitored closely, weighed regularly and each stool weighed and noted as a guide to how much his body was absorbing.

Finally On June 2nd 2009 10 days before his 1st birthday Aaron was discharged as an in-patient and allowed to come home. We recently had to move house to accommodate all of Aaron’s medical equipment for TPN and were well prepared in the measures needed to take care of Aaron. For example Aaron’s body dehydrates at an alarming rate and he had to take a number of daily medications at different times throughout the day. All the community support teams were in place to help take care of Aaron as the year’s stay in hospital had hindered his development considerably meaning that even though Aaron was almost a year old he couldn’t roll over or sit up unaided.

Aaron did return to hospital on a few occasions since being discharged, for treatments of line infections, dehydration and viral infections but in November 2009 Aaron was having 12 hours a week of TPN. He then contracted yet another stubborn line infection so Mr Morabito removed Aaron central line completely, but this time it could stay out. It was the first time since birth that Aaron had no wires, tubes or lines coming out of him.

Since November 2009 Aaron has stayed TPN free. His diet isn’t as strict anymore; he can eat most of the things that we can, with only a few limitations. Aaron is small for his age and medically underweight but this is to be expected. He passes loose stools 6-8 times a day due to the small amount of bowel that he has. He never feels full. Aaron’s appetite really did grow with him. He still takes daily medications including vitamins as he has a deficiency. Aaron has done well catching up. Developmentally he does still suffer with considerable delay but now he can walk, talk and run around with his brother and his friends from nursery. Aaron is happy and content and doesn’t remember his year in hospital but still attends for regular checkups.

Aaron is 3 now and makes a little bit more progress every day. He requires full support in school with both his toilet needs as he is not fully continent yet and his academic learning due to his delay. Aaron is bright and active just like any other 3 year old boy. We are so proud to call him our little miracle solider who carried on fighting the war even though he lost the bowel!

There are not enough words to express the gratitude we feel for Mr Morabito and all his wonderful team. Without him Aaron would not be here today and for that we are eternally grateful.

Also to all the nurses that worked on the Victoria ward, thank you for the time you spent caring for Aaron. Each and every one of you are amazing. Your care and the understanding shown to all our family will never be forgotten.

Registered with:
The Charities Commission for England and Wales

Registration Number: 1149354

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