Jamie

This is the early story of Jamie Kilduff who entered this world as a tiny spark and has bursted into a mighty flame.

Born at 29 weeks 5 days on 24th January 2023, Jamie was born early via emergency c-section due to his Mum being diagnosed with severe pre-eclampsia which developed into HELLP Syndrome not long after. He arrived into the world strong and healthy despite only weighing 1.26kg. We remained at Auckland Hospital’s Neonatal Intensive Care Unit (NICU) while Jamie grew stronger every day. Soon he was able to feed on enough milk via nasogastric tube (NG) that his longline IV could be removed.

The Doctors were so happy with his progress that he was put onto the waitlist for Waitakere Hospital’s Special Care Baby Unit (SCBU) at 32 weeks old. Everything was going so well, we were so excited at the thought of Jamie being in a hospital closer to home and started counting down the weeks until we could finally bring our baby home. That was until everything changed less than two weeks later.

As new parents we were becoming more comfortable with the new duties of parenthood. Feeding via NG, reading books, and nappy changes became a new routine in our daily life. One day, when changing his nappy, we were surprised to see an unexpected coloured stool. We showed the nurse and she was worried it may be old blood passing through his gastrointestinal tract. After a discussion with the Doctors, Jamie was put on nil by mouth to see if the issue would resolve itself and another IV longline was put in to feed him nutrients and give his intestines a rest. X-rays showed free floating air in his abdomen and the medical team feared that he had potentially developed necrotizing enterocolitis (NEC). Jamie didn’t respond well to being nil by mouth and he started to deteriorate. It was clear something was wrong inside him and the team had to make a move now. He was taken into emergency surgery to investigate. The surgeons told us it could be a number of things but NEC looked to be the most probable cause. We were heartbroken, in absolute shock, the pain we felt was unbearable. We waited in the NICU extremely anxious whilst they operated on our tiny baby. For around six hours we thought about what had happened and could not understand how things changed so drastically.

We finally received the call, Jamie made it through the surgery and the team was ready to meet with us and discuss the outcome. The surgical team explained to us it was worse than they had thought, they uncovered a large section of dead intestine and a small section in a bad condition. They suspected that he got a blood clot in a major artery that supplied blood to sections of his small intestine. Jamie lost 60% of his small intestine and was diagnosed with short bowel syndrome. To allow his intestines to rest, Jamie was completely dependent on total parenteral nutrition (TPN) through a long line IV which fed nutrients directly into his veins.

Everything was a blur, we had never heard so much medical terminology before, we were still trying to deal with the whirlwind of having a premature baby and now we didn’t know what the future looked like for Jamie.

Throughout our time in NICU we saw many families come and go while Jamie remained in his original high dependency room. All waking hours were spent next to Jamie’s side, I was visiting twice a day once, returning once Jamie’s dad finished work for the day. We would call NICU for an update every night and sometimes early morning when we couldn’t sleep. We faced many dark days with an uncertain future. Because of covid restrictions, we were the only people allowed to visit Jamie so family and friends relied on photos and videos until they would meet this little fighter in person.

Jamie started to turn a corner and was making progress with his recovery. When Jamie was able to start trialing breast milk through his NG tube again, it was a very slow and uneasy process. This was his first real food that he was able to take orally and he loved it! After getting a proper taste for it, we would scream and cry wanting more milk, but due to his fragile intestines we couldn’t push it too hard otherwise we would risk further damage. As a parent, this was torture for us and it broke us even more. But finally after six weeks came the day for Jamie’s bowel reconnection surgery. He was at the next step of his recovery and we quietly celebrated the small steps to getting closer to home.

Jamie was referred to the Intestinal Failure & Rehabilitation Service at Starship Hospital and the team started to visit him whilst he was in NICU. Once Jamie was 40 weeks gestation, he moved across to Starship Hospital and was on the Medical Specialities ward. This became our home where we lived with him. Jamie outgrew his longline so he went into surgery to get a central line IV (CVC) placed into one of the main arteries in his chest. We had never experienced so much pain, we felt everything that Jamie went through and all we wanted to do was heal him and stop the pain he had to endure.

But despite many setbacks and hard times, Jamie always reminded us of how hard he could fight. Alongside this he showed us how strong his grip was becoming as he started pulling his NG tube out multiple times a day which led to more trauma everytime is was reinserted.

We never stopped believing in Jamie and he continued to show his will to fight and succeed. My husband held down his job to pay our mortgage and slept in a recliner chair next to us every night. Times were tough and we were referred to IDFNZ who helped our family so much.

After a few weeks in Starship, the team made the decision to switch Jamie to a high calorie specialised formula which would allow him to absorb calories easier and gain more weight. The goal was for Jamie to reduce hours of TPN and increase oral intake of formula. Because of the trauma that Jamie had been through with intubation, prolonged NG tube use and medical treatment, they thought that he may have had an oral aversion but he took to the bottle like a champ! Jamie was doing really well and the team were very impressed with his resilience and health.

After a long 8 weeks stay in Starship, my husband and I were trained on Jamie’s TPN and medical care at home and we were finally discharged. Once at home, Jamie was supported by HomeCare for Kids, a speech and language therapist and a development therapist at Waitakere Hospital as well as his Starship team. We were so excited to finally bring our baby home and show him the world outside the hospital.

Wherever Jamie went, his IV line pole followed so we had to learn how to manoeuvre him around the house. Our lives were very busy filled with medical appointments and home visits. Jamie initially had TPN running for 22 hours a day and had NG tube continuous feeds running at night time with formula and pedialyte to avoid dehydration.

We also had to record his daily input and output and report back to the team. It was a small adjustment that meant we could have our baby home.

As Jamie was weaning off the TPN, he was having a few hours off the machine at a time. We got to leave the house without wires or machines and just live life like any other family. Jamie really started to show everyone what he was capable of, he was so happy to be home. Jamie went from strength to strength and we could see the goal of coming off TPN getting closer. However, unfortunately after a really impressive few months, Jamie got an infection in his central line and was hospitalised with sepsis. The antibiotics worked well, they managed to save his central line and he was discharged a week later. Another close call, but he fought hard once again and bounced back quickly. Jamie had such an amazing community nurse who had a lot of experience with short gut kids and she couldn’t believe the milestones that Jamie was achieving quickly.

Early into his recovery journey we were told Jamie could be on TPN for years, but at 10 months old Jamie came off TPN completely and his central line was removed. At 11 months old he was eating solids and drinking enough milk orally to no longer need an NG tube. At 1 year and 1 month old he was discharged from the Intestinal Failure & Rehabilitation Service and the HomeCare for Kids service at Waitakere Hospital. We feel so fortunate to have Jamie in our lives and that he chose us to be his parents. We are so thankful for the huge effort so many people have put into fighting alongside Jamie. He wouldn’t be where he is now without each and every one that has helpedw him on his journey. Most of all we are all amazed by him, his community nurse called him Superman and that is exactly what he is.

Now over 2 years on, Jamie is the happiest and healthiest little boy with no idea of the journey he has been on. When we were in the darkest of times, we could not see any light at the end of the tunnel but Jamie taught us many things along the way and we never gave up. Jamie showed us that with constant love and hope, the right medical team and a fight to survive, anything is possible. Jamie’s medical team told us that he would have a high pain threshold because of the pain he endured as a baby and we are amazed by the strength and will power that he shows us everyday.

Apart from having an irritable bowel,he lives a normal life, eats the same meals as the family and goes to daycare 3 days a week. We have not let Jamie’s condition hold him back in any way, he fought extremely hard to be here so we want him to live a great life.

We will be forever grateful and blessed to have such an incredible little boy who proves to everyone that scars are only skin deep.

Written by Jamie’s Mum & Dad who love him dearly

Jessi & Liam Kilduf