Fighting from his first day: Kiah's story

Trigger warning: This story contains images that some may find upsetting

During pregnancy, parents Ilona and Ryan were told that their son Kiah, would require special hospital treatment immediately after birth for a known condition. Unfortunately, Kiah would go on to require more surgeries than expected and overcome many medical obstacles, just weeks into his life.

Thankfully, Ilona and Ryan were able to stay close to Kiah in hospital as he fought the odds and were provided with accommodation at Ronald McDonald House Birmingham, to be close by and support Kiah’s recovery.

Guest blogger: Ilona

When I was just 12 weeks pregnant, me and my partner Ryan, were informed that our baby Kiah would be born with some medical issues. We were informed that he would be born with gastroschisis – a birth defect where there is a hole in the abdominal wall beside the belly button. Knowing this early in the pregnancy still couldn’t have prepared us for Kiah’s journey after he was born.

After birth, Kiah began his life on the neonatal intensive care unit (NICU) at Birmingham Children’s Hospital and faced many challenges from the start. Within his first week alone, Kiah had to undergo four operations, with his first happening at just one day old. With his bowels having formed on the outside of his body, the surgeries all contributed to get his bowels back inside and required Kiah to have some intrusive treatment such an NG tube (nasogastric tube) up his nose, a central line (a tube to give fluids) in his neck and a cannula (a thin inserted tube) in his hand and foot.

Kiah then had a central line put by his heart and it seemed as though he was making progress but the two millilitres of milk being fed to him was just too much for his little belly to handle and he took a turn for the worst. He had a big ‘desat’ (drop in blood oxygen levels) and it was discovered that he had sepsis. After a broad spectrum of antibiotics, Kiah managed to recover from the sepsis but was still poorly and caught infections.

Thinking that my baby had been through the worst, Kiah needed to have stoma bag put in place and had to go through a seven-hour operation. As he came out of the surgery, Kiah’s body went into shock, and he couldn’t breathe properly. Recovering in the surgical ward, the pressure in his stomach caused the wound that had just been stitched up to open leading to yet another infection!

It has been a long and stressful journey for us all, but Kiah keeps fighting. After a long three months, his belly has healed itself and we’re now focusing on his feeds. Ryan and I have had our Parental Nutrition training (PN) for his central line, thinking that this is how we would be progressing once home, but Kiah has managed to do so well with his milk lately, we think he will be off it soon.

Going into hospital originally was scary and concerning for us both as we were dealing with the unknown. Kiah’s condition is different with every baby, some can recover within four weeks, and some can be much longer. We were so relieved to find out about Ronald McDonald House Birmingham from a nurse on NICU, just three days after Kiah was born.

We were just so overwhelmed to discover that a place like this existed. Not only was it a place to rest and sleep without having to travel 120 miles daily from our home in Craven Arms, Shropshire, it was so also close to Kiah in hospital. If we ever need to be with him or if there was an emergency, we could both be there in minutes rather than hours and that was comforting.

Having accommodation at the Birmingham House has made a huge impact on us because it’s allowed us to stay as a family during such a difficult time. It has allowed us to build bonds with our son as we would have done if we were home. It also saved us a great deal financially as it would not have been possible to see Kiah every day with such a long journey to the hospital.

The most impactful aspect for us would be that we are in such a proximity to our son have been able to maintain a degree of normality by getting him up in the morning and putting him to bed at night. Still maintaining a routine with Kiah has meant the world to us, despite being him having been hospital for his life so far.

The staff at Ronald McDonald House Birmingham are brilliant. The amount of effort the team at the House put in every day to make sure families like ours have a smile on our faces is just incredible. During our stay, we have met some lovely and supportive people who we have built amazing friendships with and had the opportunity to connect with other families in difficult circumstances.

After just over nine months, we are still staying at Ronald McDonald House Birmingham but are hopefully that as Kiah continues to get stronger, we could be looking at going home in with the next month or two. We’re so grateful for the support of the House through the start of Kiah’s challenging life and we’ll be telling everyone to donate and fundraise for Ronald McDonald House Charities UK so more families like us can be close with their little ones.