Family Stories

Malone Family

 

Malone-Family

Ryan was born on the 22nd February 1999 in the Belfast City Hospital Jubilee maternity unit weighing 7 pounds 13 ounces. He was born a healthy baby with no complications at birth. As a family we were overjoyed as Ryan was brought into the world. His sister Ashley and brother Mark were both very excited at the prospect of a new baby brother and couldn’t wait to see him…

However it was not before long that our bubble burst. I was sitting in the labour ward holding my precious beautiful baby boy alongside my sister when I noticed that Ryan’s whole body had gone limp and he had stopped breathing. I told my sister to run and get the midwife while I started to resuscitate Ryan. My husband had left a short time before to bring my other two children up to see their new baby brother.

I couldn’t believe what was happening in front of my eyes. All I kept thinking is my son going to die…… My beautiful baby boy was rushed away to the special care baby unit in the Belfast City Hospital. His condition was rapidly deteriorating and no- one could tell me what was happening to my baby boy. After what seemed to be a very long time the doctor came and delivered the devastating news to my husband and I; that our son was critically ill with a heart condition and that they would do everything they could to try and stabilise him before they could make any attempt to transfer him to the Royal Belfast Hospital for Sick Children.

Everything seemed such a haze and the belief that this was actually happening was hard to take in. After what seemed like ages the team explained to my husband and I that they had no choice but to transfer Ryan as an emergency with all crew on board by ambulance to Clark Clinic in the Royal Belfast Hospital for Sick Children.

Thankfully he made the journey and was brought to Clark Clinic the children’s cardiology ward. Everyone was so kind and caring and I remember Sister Kearney talking us through Ryan’s care. Dr Mulholland spoke to us and explained that Ryan had a congenital heart condition called transposition of the great vessels. He drew a diagram of Ryan’s heart condition to explain this to us in more detail.

It was difficult trying to come to terms with the fact that my baby boy had a heart condition especially as he was our third child and there were no complications detected throughout my pregnancy.

After a few days in Clark Clinic Ryan’s condition began to deteriorate and he was transferred to the paediatric intensive care unit. This was a frightening experience for the entire family knowing that Ryan’s condition was becoming a lot worse.

The whole team were extremely professional and tried to give us support and reassurance however Ryan’s kidneys were beginning to fail and his body had ballooned to double the size. The decision was made that they would have to operate otherwise Ryan would die. The complications were explained to us and the risks involved but we really didn’t have any other choice than to let our son go through surgery.

The day of surgery was one of the most difficult days of our lives, having to leave our son in the operating theatre not knowing what lay ahead. We just knew that everyone would do everything they could to help our little boy. It seemed like an eternity waiting to hear any news on how the surgery was going. We went to the Heartbeat accommodation which was a godsend whilst we waited on the phone call to say the surgery was over. Thankfully Ryan’s surgery was successful.

The Doctors however warned us that we should take everything minute by minute as Ryan was still in a very critical condition. Ryan spent a further six weeks in cardiac intensive care before we heard the fantastic news that Ryan was to be transferred back to Clark Clinic in the children’s hospital.

Finally my husband and I were able to hold our baby in our arms as were his two siblings. Thankfully Ryan’s condition started to improve daily and his weight started to increase. It was not long before he was discharged home.

As a family we will never be able to thank all the staff in Clark Clinic who were really amazing Dr Mulholland, Dr Craig, Dr Casey, Dr Sands and Mr Gladstone who worked day and night as well as the anaesthetists, cardiac investigation staff and nursing staff. Without them our son would not be here today.

Ryan continued to have regular check-ups and began to do really well. He grew up a healthy and lively young boy with no setbacks. He enjoyed playing squash and tried to keep as fit as possible.

At the age of twelve Ryan started to feel more tired than usual. He began to have reduced energy levels along with fainting episodes. I spoke to Dr Sands about Ryan’s symptoms and he asked for Ryan to be reviewed. Ryan had numerous tests carried out and a cardiac catheterisation was performed. It was following the results of this that Dr Sands broke the news………. Ryan had developed sub aortic stenosis and would need further open heart surgery.

Ryan was devastated and could not believe the news. He became very apprehensive at the prospect of undergoing cardiac surgery. He felt that everything was being taken away from him especially not being able to play squash or take part in competitive sports along with his friends. He felt very isolated as he was no longer allowed to take part in P.E. at school or sport after school.

Thankfully Ryan decided that he would start taking lessons in the guitar and has since become interested and involved in various musical activities both in school and after school and is working well towards completing grades in the guitar.

Ryan went through his surgery in November 2012 and thankfully it was a success and Ryan was out of hospital within ten days. He is now sixteen and preparing for his GCSE’s in the summer with the hope of going back to school to do his A levels.

Children’s Heartbeat Trust has offered us support, guidance and advice throughout the years and Ryan and I are currently involved in their teen’s programme. I volunteer as a family coordinator for the teen’s programme organising meetings for parents of the teen’s so we can get to know each other a bit better and support each other if needs be!

Ryan took part in the Children’s Heartbeat Trust Summer Blast last summer which was a residential for teen’s living in Northern Ireland with heart disease. The Summer Blast was great as it gave Ryan the opportunity to meet other people his age with heart disease and talk about some of his own thoughts on living with heart disease. Ryan really enjoyed the Summer Blast and has met up with the friends he made there a few times this year. We are both looking forward to seeing everyone again and welcoming new teens and parents at the 2015 Summer Blast!