Baby Jack's Journey

Jack is 2 years old with complex needs. He was born 13 weeks early weighing only 690 grams. Jack has spent his entire life in hospitals between Cork University Maternity Hospital, Holles St., Temple St., Crumlin and University Hospital Kerry. Their family and friends have put together a gofundme to help with travel costs, accommodation and treatments which are ongoing.

After 7 years of trying for a baby, multiple miscarriages, told we would never be able to get pregnant, to see that positive result on a pregnancy test was just a rush of emotions. We couldn’t believe it, we were finally going to become parents. Little did we know the journey we were about to go on.

At our 21 week scan in University Hospital Kerry, it showed fluid and enlarged ventricles in Jacks brain and holes in his heart. We were sent to Cork University Maternity Hospital for further scans and testing. From there we were sent to Holles Street Hospital and The Coombe Hospital in Dublin. These scans showed Jack has a horse-shoe kidney and Grade 5 reflux in his bladder, he was also diagnosed with severe IUGR (Intrauterine Growth Restriction), when a baby in the womb does not grow as expected. We were devastated and kept thinking we would lose him. We were scanned every two weeks in CUMH and at 26 weeks pregnant, I was admitted.

We were scanned every second day and had foetal dopplers done every couple of hours, to check Jacks heartbeat. At exactly 27 weeks, we had a scan early that morning and it showed AEDF (Absent End Diastolic Flow), the flow in my placenta was insufficient and they would have to deliver our baby. The consultants went through all the risks with us, we knew he was severely underweight and they also prepared us, as much as they could, that Jack could be stillborn when he was delivered. They prepped us for an emergency C-Section, we were so scared, what should have been an exciting, joyful time, we were about to meet our baby, we were overwhelmed with worry and stress, we didn’t know what to expect. When Jack was delivered, we kept asking, is he alive?, is he alive?, we couldn’t hear any cries. Then after a few seconds, which felt like a lifetime, his tiny cry filled the room, he was alive. He weighed only 690 grams.

I couldn’t have my glasses on during the surgery but the nurses made sure to put them on me and dropped the screen when he was born so we could see our beautiful baby boy and for that brief moment, we were complete.

The paediatric team were on hand and took control of Jack straight away, They put him on a ventilator to help his breathing and rushed him to the Neonatal Intensive Care Unit. Joe went with him while I went to recovery, I couldn’t see him for 24 hours. It was agony, no mother should be away from their newborn baby. He was so tiny but he was alive and fighting. We spent six months in the Neonatal Intensive Care Unit, sitting beside him, reading books and playing music. We weren’t able to hold him for the first few weeks, which was so heartbreaking.

At two months old, we were transferred to Holles Street Hospital, Jack had developed Stage 2 ROP (Retinopathy of Prematurity) in his eyes, thankfully no surgery was needed and we were transferred back to CUMH. Two weeks later, the fluid had built up in his brain and his ventricles had increased to a worrying size, we were transferred to Temple Street Hospital, where he had a Ventricular Access Device fitted into his brain so when the fluid built up again, doctors could insert a needle and drain the fluid at his bedside. He had multiple complications and infections during the six weeks spent there. Jack was treated for sepsis, suspected NEC, feeding issues, kidney complications and on oxygen 24/7 for chronic lung disease. After six weeks, we were transferred back to CUMH. We were hearing and seeing things no parent should ever witness and knew the medical language, his wires, the machines, alarms and numbers that no parent should ever be aware of. We were understanding Jacks cues and knew what to look out for as he would become critically ill so fast.

At five months old, Jack was transferred to Crumlin Hospital, he had developed Pulmonary Stenosis in his heart and needed surgery. Jack had a cardiac arrest on arrival and the doctors and nurses worked on him at his bedside, they got him back and he was transferred to the Paediatric Intensive Care Unit, there three days later, he went into cardiac arrest again. All the alarms started going off and the doctors and nurses came running towards us, a nurse ushered us to the parents room and explained what happened and said quietly to us, we should think about having him baptised, if he has a third cardiac arrest, it would take him. There are no words to describe how we were feeling. We agreed to have him baptised, the chaplain came to speak with us and arranged everything. We went into the city centre to buy a christening candle and a shawl, we were crying so hard, we couldn’t even talk to eachother. Its not how you should be planning your babys christening. It was an intimate ceremony, Joe, myself, Jack, his nurse and the chaplain at his bedside in the PICU. He couldn’t wear clothes because of all the wires on his little chest, but the nurse managed to get a white vest on him and I had a yellow cardigan that my grandmother had knitted for my dad when he was a baby. We put that on Jack too, it was mentally healing to know he had something from his family with him. It was also so hard for all our family and friends back home, feeling so helpless to our situation.

Thankfully, two weeks later, Jack turned a corner and we were transferred back to CUH, he was too old to go back to the NICU so we were transferred to the Ladybird Ward. We spent three months there. On the 02nd of August, 2022, we finally crossed the county bounds as a family, to Kerry. We spent four months in the Cashel Ward in UHK, whilst there we had another trip to Crumlin for a surgery to put a PEJ feeding tube in. This meant he would be fed into his bowel and not his stomach. We also had a transfer to Temple Street Hospital for a surgery for a vesicostomy (an opening in his abdomen, below his belly button, to drain the urine), this helps relieve the pressure in his kidneys and bladder. Jack was prone to UTI’s and Urosepsis. We finally got home home on the 23rd December, after nearly 13 months in various hospitals. Santa gave us our Christmas wish.

Jack had another surgery in September 2023, he had a shunt fitted into his brain to treat hydrocephalus. The shunt drains the extra fluid and helps prevent the pressure getting too high in his brain.

Joe says he is full of fun, if you didn’t read his file and met him for the first time, look beyond the oxygen and pej feeding tube, you wouldn’t think there was anything wrong with him. He is doted on by everybody who meets him. He is such a fun, lovable rogue. Always smiling and happy for everything he has gone through and has to go through.

Jack has had two cardiac arrests, 7 surgeries, numerous blood transfusions, RSV, Covid 3 times, Rhino Entero Virus, multiple UTI’s and Sepsis, he has fought everything, He will eventually have to have a kidney transplant but we will cross that bridge when we come to it. He is developmentally and physically delayed, not at the same stage as other two year olds. We are awaiting more genetic test results, our genetic consultant has confirmed he does have a rare genetic syndrome and this has caused all his health complications, but it is not showing on any genetic tests yet but new tests are coming out all the time so hopefully we will have answers some day. We just want to know what we are up against and what the future holds.

It is mentally, emotionally and financially draining but we wouldn’t change it for the world. We are meant to be on this journey with Jack. We have met some incredible people along our way and made lifelong friends with parents we met in Hughs House and Ronald McDonald House. We stay in touch with some of his nurses in various hospitals too. Jack was given to us for a reason, we could have lost him at any stage. He takes it all in his stride and we are so proud of him. He seems to look at you as if to say, I’ll do my best but give me a helping hand when I need it. Hospitals will always be apart of our life, it comes with the territory when you have a complex needs child, these journeys can be stressful especially as you have a lot of equipment to bring with Jack, Bumbleance is a fantastic service we use frequently, it really takes the stress out of a journey, we would be lost without it.

Jack requires 24/7 care, between his medications throughout the day and night and his four hourly pump feeds, it can be exhausting and overwhelming for us. We have nursing care 5 nights a week with Resilience Homecare package, we are linked in with our Public Health Nurses, Jack and Jill Foundation, LauraLynn Hospice, Resilience Social Care and Enable Ireland and Leahys Pharmacy for all his medications and feed. The 2 nights we don’t have a nurse, Joe and I split the days and nights so one of us is always up with him. Until you have been through it, you don’t realise what people are going through. Having a child with complex needs is extremely challenging and you need all the help you can get.

We have fantastic support from family and friends and are very lucky to have a dedicated group of professionals on Jacks Team between Kerry, Cork and Dublin Hospitals.