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Ryan’s story.

News   •   Oct 16, 2017 12:40 BST

Ian, Vicki and Ryan.

Ian and Vicki waited 14 years for pre-implantation diagnosis and IVF treatment to try to prevent passing a genetic condition to their child. The condition, known as Treacher Collins syndrome, results in the underdevelopment of bones in the skull. The couple received funding for three cycles and fell pregnant on the third cycle. Sadly, six weeks later Vicki miscarried. Without any further funding, they felt like their dream of having a family was slipping further and further away. However, a few months later, Ian and Vicki decided to try to conceive naturally which meant there was a 50% chance of passing on the syndrome.

Vicki fell pregnant, but at 30 weeks had a placental abruption and needed a caesarean immediately in order for her and her baby to survive.

Ryan was ten weeks early, weighing 3lb 6oz, and was rushed straight to the neonatal intensive care unit (NICU) where his parents were told he’d be likely to remain until his due date. But as the weeks passed Ryan began experiencing breathing difficulties.

Sometimes Treacher Collins syndrome can restrict a child’s airway as the tongue can be too big for the jaw. This was causing life-threatening problems for Ryan which meant rather than taking him home, he was transferred to Addenbrooke’s Hospital – over an hour away – for anasopharyngeal airway (NPA). An NPA would help Ryan to breathe as the tube would bypass the obstruction and open a channel between the nostril and nasopharynx.

Every day Vicki travelled to Addenbrooke’s Hospital to see Ryan up until he had a tracheostomy, where a tube was inserted into his neck to help him breathe.

After the operation, Ryan stayed in the paediatric intensive care unit (PICU) for six weeks and a day. And during this time Ian and Vicki were never more than a few minutes away from their son’s hospital bedside. Because they were given a room at Acorn House, which is run by The Sick Children’s Trust. Vicki says:

“Acorn House simply made life so much easier. I could get up, express and be by Ryan’s side all before 9am. And when my husband came to visit over the weekend, he could get some rest. Before having our room at Acorn House, Ian would drive up after work on a Friday evening and by 11pm we would be driving back home. We had two cars and after a long day we were exhausted. Acorn House changed this; it meant we could have some much-needed rest, and spend so much more time with Ryan.”

Ryan recovered really well on PICU and was more or less ready to go home a week after his operation. However, Ian and Vicki needed to learn how to care for him. They were given weeks of training to make sure they felt comfortable by the hospital, and before they went home, Ryan spent two nights with them at Acorn House. Vicki adds:

“The fact that we could do this is what made Acorn House so valuable. Acorn House gave us a safe environment where we could see how we’d cope with family life and taking care of Ryan and his needs. We were on our own but the nurses were on standby in case anything happened. It was the first time we’d taken care of Ryan on our own, and knowing that we were just minutes away from the hospital at Acorn House, and the nurses were on hand, gave us the confidence to care for our son. If we didn’t have this ‘Home from Home’ we wouldn’t have had direct access to the hospital staff and we truly believe Acorn House is the reason we got him home so quickly.”

Last August, Ian and Vicki took Ryan home and, although he has had a few trips back to hospital since, he is doing really well. Vicki continues:

“He is developing well and is such a happy baby, but he does have a huge battle on his hands. Over the next few years he’ll be undergoing further surgery and we hope that by the time he’s at school he will have his tracheostomy removed.

“But even though there’s been a lot of stress and strain put on our family, we just feel so lucky that he’s here and he’s alive. Sometimes I catch myself looking at him and thinking, ‘oh my God, I can’t believe he’s here’ because motherhood seemed so far away at times. But now I have my baby, he’s perfect and I love him with all my heart. To finally be a mum is a dream come true, and to have Ryan as our miracle baby makes things all the more special.”

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