Heather's Story
Send a Kiss to the Clouds, A Love Story
Aaron – Our Little Smiler
I don’t know where to begin this story, but I think the best way is to start in April 1992 when my husband Mark and I were living in blissful happiness with our two beautiful sons, Jamie who was 6 years old and our baby Aaron who was born on 10th April 1992. Aaron was a very happy baby who slept through the night at 6 weeks old and walked at 10 months old. He was always smiling, and he won a bonny baby competition which made his nana very proud! He had a few coughs and colds over the months but other than that he was a very healthy baby who was adored by his older brother Jamie.
On June 12th, 1993, when Aaron was 14 months old, he started with a temperature and a cough, so I took him to the GP who prescribed some antibiotics. The cough didn’t improve so I took him back to the GP and he sent us to the local hospital to get an x-ray just to see what was going on. I took him straight to the hospital and after waiting for hours it was eventually our turn to take Aaron in to get the x-ray and that is when our lives changed forever.
After an hour a nurse came and took us to a room where two men were waiting for us. They introduced themselves as Dr Bain and Dr O’Sullivan from the Freeman Hospital. (We did not know it then, but the Freeman Hospital would become our ‘home from home’ for the next 32 years) Dr Bain explained that our beautiful baby’s heart had enlarged and he was extremely ill, he would be transferred to the intensive care unit at the Freeman Hospital immediately.
They started to attach wires and monitors to Aaron, and I was soon in the ambulance and off to the Freeman with my husband following behind in the car. I can remember clearly thinking “what on earth is happening,” looking at my gorgeous baby lying on my knee attached to all of the machines and monitors. I honestly thought we were going to get to the hospital, and the doctors were going to tell me they had made a big mistake and could you take him home please. Of course that did not happen.
When we got to the ICU, my baby was taken off me and attached to even more monitors, make lots of different noises and all we could do was stand helplessly and watch, holding his little blue drinking cup that he loved. I desperately tried to understand what was happening, but everything happened so quickly, and my mind just couldn’t take it in. The doctors told us they were giving him drugs to help his enlarged heart work better. He said he was very sick but stable. After a few hours the nurses told us to get a cup of tea, and they showed us a room and after they closed the door we just sat in silence. After what seemed like a few minutes we heard footsteps, and I just knew they were coming to us and sure enough they knocked on the door and told us Aaron had taken a turn for the worse and that they needed to get him onto a ventilator, but we could go and see him first. We went in to see him, and I gave him a kiss and left the room again, this time we walked outside to get some air. We walked around the car park waiting for the nurse to tell us that we could go back in; the nurse did come but it was to tell us our baby boy had a heart attack while they were trying to put him on the ventilator. I can remember running upstairs and Dr Bain and Dr O’Sullivan came to see us; they very gently told us there was nothing more than they could do for Aaron and that the machine that was keeping him alive would need to be switched off when we were ready. I cannot put into words the confusion and shock I was feeling. We were both just numb, this couldn’t be happening to my beautiful, healthy, clever, smiley baby boy.
But on the 19th of June 1993 as I held and cuddled my baby boy the machine keeping him alive was switched off and the sound of that will live with me forever as it signifies our perfect happy life being ripped apart. We had to leave our Aaron behind and walk through the hospital doors to go and tell Jamie that his baby brother wouldn’t be coming home. I was still holding his favourite drinking cup.
Niall – Our Cheeky Chappie
We found out in December 1993 that we were having a baby. I was scared and anxious throughout the pregnancy. We were still grieving for our baby Aaron, and I felt guilt and sadness for the baby who would be joining our sad and broken family. However, on the 26th July 1994 our very loud and very ginger baby boy was born. Niall made his presence felt from the moment he was born. He was cheeky, determined, bad tempered, clever and had a heart full of love for everyone he met. His mischievousness was quickly forgiven when he flashed his infectious smile. Everybody who met our Niall loved him instantly; he had a light that followed him.
He was checked monthly and everything was fine, so the doctors told us that Aaron must have contracted a Myocarditis which had weakened his heart, they were convinced it would not happen again, but they still wanted to keep an eye on Niall. As he reached 14 months, 2 years, 3 years, and the hospital appointments changed to six months we slowly started to relax a little and the hard pebble of grief that I carried round with me started to get a little easier to bear. We had another beautiful addition to our family on May 22nd, 1997, our son, Jordan James and our family was then complete.
Niall started school in September 1998, the youngest in the class and the most trouble! He loved school and he loved windmills, Dipsy the Teletubby and Gary Neville! On July 15th I received a call from Niall’s school to ask me to come and collect Niall as he wasn’t feeling well. He said he had a ‘sore head’ so we went home, and I gave him some paracetamol, and he fell asleep on my knee. My brother was visiting us from Texas, so we had arranged to go to away for a couple of days to show his new wife Northumberland. I asked Niall if we wanted to stay home but he wanted to see the castle, so we did go, but Niall was still not well, so my husband and I left our two sons with my brother, and we brought Niall home to get checked by the GP. He checked him over and couldn’t find anything wrong but for my peace of mind asked the Freeman to check him over. We drove over and our ‘beloved’ Dr Bain came to see him, examined him, ordered immediate x-rays and then came to see us, and from the look in his eyes, I knew something wasn’t right. He told us Niall’s heart had enlarged, and he would need to be admitted immediately to be given medication to help his heart. He held my hand as he said, “We will do everything we can.”
I cannot put into words the shock, disbelief and fear I felt, I wanted to pick my beautiful boy up and run out of the hospital and go miles and miles away where this would not be happening, but of course I did not. The first couple of days in hospital went well, Niall seemed to be doing okay on the medication which was helping with the heart function, and he was on the ‘normal ward’ not ICU, so I ignorantly thought that meant he was doing well and desperately clung onto that way of thinking. On the 16th July my husband begged me to go home and see my two boys (Jamie was now 13 and Jordan was 2) who had been asking for me. I reluctantly agreed but as I walked through our front door the phone was ringing. It was Mark telling me he was a little worried as the nurses had been in and out of the room checking the monitors, so I immediately turned round and drove back to the hospital. I can vividly remember running through the doors of the hospital and into the ward, just as I got to Niall’s room he looked at me and had a heart attack in front of us. We were quickly put in another room, and we could hear furniture being noisily moved around and then nothing.
What seemed like forever passed until the door opened and Dr Bain and Dr O’Sullivan came in and told us Naill had suffered a massive heart attack, he said they had managed to start his heart again but it was very weak and needed a heart transplant, so he needed the help of a machine called ECMO to keep him alive till a heart became available. He told us specialist doctors were flying in from Belgium to help them with the ECMO machine. He left us to wait for the transplant team to come and explain everything to us. When they left the room my husband and I looked at each other and just stayed silent, we were both in shock, I could not believe this was happening to us again. Over the next few hours as we waited for Niall to get onto the ECMO machine so many professionals came to meet us and gave us so much information about transplantation process, but all I could think of was a child has to die in order for my child to live and in that moment could understand the heartbreak that the family would feel, but as I held the hand of my gorgeous boy in ICU I couldn’t bear the thought of losing him.
Niall fought hard to get on the ECMO but he did it and was doing well. I was able to be with him 24 hours a day, he would squeeze my fingers and bite on the sponge as I cleaned his mouth. On the 18th June the nurses needed to clear his chest so asked me to leave the room for a couple of minutes. An hour later the door opened, and Dr Bain and Mr Hasan came in, they told us one of the tubes had slipped a little when they were clearing Niall’s chest and they were concerned that a little air might have got into the tube so they would have to do some tests.
I ignorantly thought to myself what difference does that make? I just needed to see him. I went back into his room and immediately knew that something had changed. I don’t know how I knew, maybe Mother’s intuition. Dr Bain told me they had done a brain test which would be repeated but I didn’t need any brain test to tell me we had lost our beautiful boy. I had one more night with my son, reading all of his favourite stories and stroking his bright orange hair. When the morning came the second test already confirmed what I knew, there was no brain activity.
So on the 20th July 1999 (6 days before his 5th birthday) Niall, our beautiful, loving, adorable cheeky chappie lay in my arms, surrounded by his loving family and went to join his brother Aaron and we left the hospital once again with broken hearts, thinking how on earth are we going to face life without him, the pain of the hard stone of grief in my heart too much to bear.
Jordan James –Our Perfect in Every Way Jord
As we slowly started to continue our life without Niall and Aaron the stone of grief inside me and the pain that comes with that was a constant reminder of everything we had lost. But every morning even before my eyes opened, I would hear ‘Mam!’ and that was enough to make me realise that I had two wonderful boys to take care of, to protect, to fill full of love. They had gone through everything that we had losing their brothers, and I was determined that regardless of how I was feeling this would be a house full of happiness.
Tests were done, countless tests that Niall had endured would give the doctors more information and one morning a few months after we had lost Niall, I received a phone call to say we had a rare mitochondrial condition that would have been passed on to all the boys and they would need to go into the Freeman for more tests. The tests showed that Jamie’s heart was a normal size with normal function. Jordan’s was a little enlarged on the left side, but he had normal heart function. He was immediately put on medication to help the heart as a precaution, he was monitored regularly, and the doctors were always pleased with him.
Life started to move on slowly; Jamie obtained a degree at Newcastle University and went to live in London to further his studies and then successfully got a job there.
Jordan ‘our baby’ was the most placid, gentle, happy boy. He loved computers and from an early age would help his teachers at school with any problems that they had with their computers. He always talked about starting his own marketing company when he was older. He was healthy apart from a couple of Asthma episodes during his school years, and the doctors were always happy with him on his frequent hospital visits. He obtained a first-class degree in Business Management and a Masters with Distinction in Marketing at Newcastle University. He then got a fabulous job at a marketing company called Silverbean where he was made a manager after only a year! He also during this time started his own company, Carousel Media with his two friends so that was a dream realised.
Jordan and I were very very close, we went on holidays together, walks together, went to concerts and art galleries together. We shared the same interests and values, and my oldest son Jamie would say we were like ‘two peas in a pod!’ I always appreciated and will never forget the time he spent with his mam even though he had so many friends to see. He made us all feel truly loved.
In early September 2024 he came home from work and said he didn’t feel great which was very unusual for Jordan, he thought he might have Covid, so he was going to work from home for a few days. He didn’t feel better after a few days so we went to the RVI and they did some tests and thought he might have Glandular Fever. They kept him in for a few days and then sent him home to rest. They explained to us that it could take a while for him to start to feel better.
On September 17th Jordan and I went for a drive to the beach (something we did regularly) and as we sat watching the waves come in, he said he felt hungry which made me so happy as he had not been eating so well. We drove home and he said, ‘Mam I feel tired and a little breathless.’ I asked him if he had chest pains and he said “No”. I said let’s go back to the hospital and get you checked out, he didn’t want to go but as always would do anything to put my mind at rest. We got to the hospital and as we crossed the road he held my hand tightly, something he had not done in years. I asked him again if he had any chest pains and he just looked at me and smiled and said, “No mam, don’t worry”. We got into the hospital, the doctors came to see him and wired him up to the heart monitor, and my husband got there from work. A passing nurse must have saw something on his monitor as she came and took us into a different room. They started taking x-rays and blood, and Jordan started to look a little scared. The doctors said to him he had pneumonia, and he looked at us and suddenly he had heart attack in front of us. The doctors quickly got us out of the room and put us into this tiny room and everything went black again. Jamie arrived with his partner Giedre and we just sat in silence for what seemed like hours. Eventually the doctors came to tell us he was still with us but was very very sick.
He needed to go onto the ECMO machine but that he needed to pass certain criteria in order to be able to do that and that the Mitochondrial Doctors were with him now making that decision. We went into see him and I cannot explain how traumatic and painful that was, looking at the Mechanical Chest Compression machine that was keeping my beautiful boy alive. The sound is something that will live with me forever.
The doctors told me Jordan did fit the criteria for the ECMO but the first hurdle was getting him onto the machine and then transporting him over to the Freeman. They told us it would take a few hours to get him there, so we drove over to wait for him. Three hours later Jordan arrived back to the Freeman Hospital which had been our home for 32 years. Dr Brennan, one of the Consultants came to tell us that they would do everything they could to save him, but he was very sick, and that we could go into see him. Hours turn into days when you are in ICU, everything scares you, the machines, the monitors, the noises, the silence, the activity of the hard-working doctors and nurses. You are there but not really there; I was at the beach talking to Jordan watching the waves come in, not here holding his hand attached to so many wires. As I sat with my boy, my best friend, my baby, I prayed and prayed he would live. He had fought so very very hard but as I watched the monitors that I had come to know so well I started to think it was getting too much for him. The doctors asked to see me, and they told me what I think I already knew, he wouldn’t make it, and that for the third time in our lives we would have to turn off the life support machine that was keeping my Jordan alive.
One of the nurses who was looking after Jordan came to me with two small red woollen hearts, she put one in Jordan’s hand and asked me to hold the other one. I didn’t question it, I just did it, not knowing how significant this small woollen heart would become to me.
So on September 18th, 2024 , we lost our very special, one of a kind, gentle, loving, clever, funny, caring boy Jordan James. He was 27 years old.
We again had to leave the hospital without our boy, this time I was holding the little red heart that Jordan had been holding and he was holding mine. I take it everywhere with me now. We are holding hands forever.
The rock of grief that I carry in place of my heart now is indescribable. As I write this I have no words, I can only say that the weight of it, the weight of grief we carry round is not only a constant reminder of the pain because our boys are not with us, but also a reminder of every day of happiness that Aaron gave us for 14 months, Niall gave us for nearly 5 years and our Jordan gave us for 27 years and I would not change that for the world. What mam would?
My Special Relationship with the Red Sky Foundation
I cannot end my story without mentioning Sergio and everyone at the Red Sky Foundation. I had read Sergio’s story about why he had set up The Red Sky Foundation months before we lost Jordan and remember being so touched by it and thought about it often. So, The Red Sky came straight to my mind when thinking of who would benefit from the collections at the funeral. I found a phone number and was amazed when it was Sergio himself who answered. He listened to my anguish with such care and empathy and immediately offered to help in any way he could.
Jordan’s death was a shock to everyone who knew him, doctors, his friends and work colleagues. Most of whom did not even know he had a heart condition. He only told his oldest friends, and they were left traumatised and in shock as it had happened so quickly and without warning. The Red Sky has provided unlimited counselling to them which has been invaluable in helping them with their grief. I have also plucked up the courage to try some counselling, again through Red Sky. Sergio himself has also met with Jordan’s friends who have set up a little charity in Jordan’s name called Jordan’s Angels, he gave them advice and encouragement. He also went into Jordan’s workplace to help them with their fundraising.
Grief leaves you vulnerable, lonely and empty, and feeling that you just don’t belong anywhere. People shun you because they just don’t know what to say. A few days after we lost Jordan, Sergio sent me a photo of a beautiful red sky that was taken that night, and a message saying, “Welcome to the Red Sky family, you will never be alone with us by your side.” That sums up the Red Sky Foundation, whatever you need, they try their hardest to get for you and my family and friends will be forever grateful to them.
