Chloe and Shay's Story
We have two children Shay who is three and Chloe who has just turned one. Both Shay and Chloe were transferred to Children’s Health Ireland at Crumlin shortly after they were born for very difference reasons and under very different circumstances. Irene - Chloe & Shay's Mum
Shay was born in August, 2019, all was perfect until we were being discharged from the maternity hospital when Shay was two-days-old and the paediatrician detected a heart murmer. Within a few hours our perfect bubble was burst and we were cast quickly into a whirlwind. Instead of going home with our first baby, Shay was transferred by ambulance to Children’s Health Ireland at Crumlin. It transpired Shay had two issues with his heart. Firstly he had a coarctation of aorta, this is a birth defect in which a part of the aorta is narrower than usual. In Shay’s case the defect needed to be addressed quickly. We also found out that he had a doubly committed ventricular septal defect (VSD), this is a unique type of defect located beneath the aortic and pulmonary valves – this needed to be addressed but not as urgently.
When Shay was ten-days-old, he had his first open heart surgery. He was in intensive care for eight days after the surgery and in total he spent 26 days in hospital. The next step was to get him home and work towards the repair of his heart, the medical team advised that the surgery for this would happen when Shay was around six-months-old and ideally over a certain weight.
Shay had a lot of difficulty with feeding and while we managed to avoid a feeding tube it was a very uncomfortable and stressful six months. We were so glad to get him in for surgery as he needed it badly. Once he got the repair he didn’t look back, even his wounds healed so well – Shay now has scars at the front and back from the two surgeries and to me they look like a little piece of art and are part of who Shay is.
We had the same consultant Dr. Terrence Prenderville throughout and the same surgeon Mr. Lars Nolke for both surgeries. They were fantastic. We had such trust in them both, it really felt like they were with us every step of the way. We will be forever thankful for what they both have done for Shay and also for how well they treated us.
I will always remember on the day of Shay’s second surgery, Mr. Nolke came to speak to us straight afterwards, talked us through everything and answered any questions that we had. This was 9pm on a Friday, it had been his second surgery that day and sixth surgery that week. I remember thinking how tired he must be, but he still took the time to see us. He was also back in ICU the next morning and was there to answer any questions that we had. Likewise with Dr. Prenderville, a very knowledgeable and caring doctor that we were blessed to have take charge of Shays care. He was so generous with his time, Dr. Prenderville was always there to answer our many questions and ease all our fears.
Shay recovered well and his follow up appointments moved to six monthly as he became better and stronger. However in September 2021, Dr Prenderville discovered a new issue which will likely require Shay to have his third open heart surgery within the next year or so. While this news was a huge setback to us as a family it so comforting to know that Shay will be under the same medical and surgical team for the next chapter of his medical story.
As a result of Shay’s heart issues, when I became pregnant with Chloe I was sent for early scans to closely monitor the baby’s heart. What transpired from the many scans I had was that while the baby’s heart looked perfect there was another issue causing concern. When I was 16-weeks pregnant there was a concern about the growth of the baby’s chin. This was monitored over the following weeks and after a lot of scans and tests our little princess Chloe was confirmed as having Pierre Robin Syndrome. This is a rare congenital birth defect which results in the baby having micrognathia (underdeveloped jaws), backward displacement of the tongue and upper airway obstruction. Chloe also had a cleft pallet.
I was back in Children’s Health Ireland at Crumlin before Chloe was born for an MRI, this was so the medical team could gather as much information as possible ahead of her arrival. For medical reasons we were fortunate to know of Chloe’s condition prenatally however it was difficult and at times we were filled with fear and anxiety. The severity of Chloe’s condition would not be fully known until birth.
I had Chloe in the maternity hospital and not to be outdone by her older brother, Chloe also left the maternity hospital by ambulance for Children’s Health Ireland at Crumlin. Unlike Shay who only came under the cardiac team, Chloe’s condition spanned a lot of medical disciplines. When we arrived at Crumlin, Chloe’s room became like a bus station. All of the medical teams Chloe needed were ready, waiting and even queuing up to see her. It was crazy but also very comforting. Chloe had and still has input from the Respiratory team, ENT, Ophthalmology, Audiology, Speech and Language, Dental, Plastics and The Cleft Palate team. That is a lot of expertise and a lot of people we became very grateful to have help Chloe along.
We were on St. Peter’s ward and while it is a far cry from the state-of-the-art Children’s Heart Centre where Shay was treated, the level of care was once again amazing. This was a very difficult time for us both as due to COVID restrictions only one parent was allowed in with Chloe at a time. As Chloe was whisked off very soon after being born, we were never together with her, nor could her bother meet her.
Chloe was initially on St Peter’s ward for seven weeks. It took a long time to figure out her feeding as she suffered very badly with reflux. Chloe was on a NG tube (feeding tube) and also had a NPA (nasal pharyngeal airway). The staff on St. Peter’s ward trained us how to use suction pumps and how to care for and change the NG tube and NPA.
We finally got Chloe home but after three weeks she was readmitted to St Peter’s for a further five weeks. Feeding problems persisted and Chloe found it difficult to deal with a viral bug that set her back, A big win came when after three months Chloe was able to breathe sufficiently on her own without the airways tube. When the tube was removed Chloe wasn’t quite off the hook and required CPAP (Continuous Positive Airway Pressure). Chloe needed a mask at night to help with severe sleep apnoea. The CPAP mask presented one of Chloe’s toughest challenges. She really struggled to tolerate the mask and it was a tricky few months until at six months old Chloe’s cleft palate repair rectified her sleep apnoea. Being told she no longer needed CPAP was a wonderful day!
Chloe had her cleft palate repair surgery when she was six-months-old. It was a big operation, intrusive to say the least but Chloe as ever showed what a little warrior she is and got through it all so well. The Cleft Palate team were incredible and so supportive to us as parents.
Chloe’s journey has made us familiar with a huge amount of staff in Children’s Health Ireland at Crumlin. From the nurses and doctors to the cleaners and friendly girls in the canteen we were fortunate to encounter so many amazing and caring people.
Both of our beautiful children would not be here today filling our home with laughter and fun but for the expertise of the staff and facilities in Children’s Health Ireland at Crumlin. To show our appreciation we now make monthly donations to Children’s Health Foundation. The donations are made in Shay and Chloe’s name each month and we feel that when they are older, this is something they will appreciate and also learn the importance and value of giving to others.
Three times we have brought one or other of our beautiful children to the theatre in Children’s Health Ireland at Crumlin. It is a daunting experience to say the least but we have always said that there is something that would be worse and that is if for some reason there was nothing they could do to help the children, no treatment that could give them the best chance of a long and happy life so we are for sure among the lucky ones and for those who make it all possible we will be forever grateful.
Irene & James – Chloe & Shay’s Mum & Dad
Christmas Jumper Day 2022
Help sick children like Shay & Chloe
Wherever you are, at home, in school/crèche or at work all it takes is gathering your friends, family, colleagues or the little people in your life to get on board to help lift festive spirits and raise much needed funds for sick children in Children’s Health Ireland at Crumlin, Temple Street and Connolly. All donations raised will help fund vital life-saving equipment and care for our little patients. And if December 9th doesn’t suit you, pick any other day to include as many people as possible – the more the merrier!
Your support will ensure that even more money goes towards the purchase of essential equipment in our theatres, wards and patient services for seriously ill children in our Children’s Health Ireland Hospitals and urgent care centres.
