Our second son, Mark, was born on the 15th June 2011. He was beautiful, big brown eyes and a full head of dark hair. From the moment people saw him they all commented on how gorgeous he was. A little brother to Nathan who was 2 years and 4 months. My husband, Kevin, and I had planned a family close together so they would be close as brothers and be friends as well as brothers.
Mark was a tough baby, he demanded a lot of our time, he always gave big smiles to his mummy and daddy. Nathan was a great big brother he stepped aside from early on knowing that Mark demanded a lot of our time. Mark was reaching his milestones, reaching out for toys and started to roll onto his side. Then it stopped.
Mark could hold his head up but for short periods of time, he stopped rolling onto his side, didn’t move his legs and would lift his arms from the elbow down. I took him to the health visitor when he was 4 and a half months old and we were told not to worry but to see if his movement developed and come back in one month. One month passed and Mark had not improved so the health visitor put a referral in to the paediatrician and we waited on the appointment.
The appointment came through for the 13th January 2012. We had a lovely Christmas with our family, Mark had a constant rattling sound in his chest that just would not move, I had been to the doctor twice with him who tried to prescribe a decongestant which the pharmacy would not give me as Mark was too young. Through Christmas and new year Mark did not sleep well, this was not unusual for him but he had got worse, he was not even sleeping for a full hour during the night.
On Tuesday the 10th January 2012 Mark’s breathing started to become laboured. My husband came home from work and we decided to take him to Yorkhill sick children’s hospital in Glasgow. Mark was admitted to hospital with his infection and they were also going to look into his ‘floppiness’. The emergency room doctor asked us if we were related, to us that was a strange question, but no we are not. The paediatrician came to see Mark and referred him to the neurosciences unit in the hospital, two days later on the 12th January 2012 the neuromuscular consultant came to see us and gave us the devastating news that Mark had Spinal Muscular Atrophy Type 1.
We were devastated. How could this happen to our gorgeous son? Mark had made it to 7 months without anyone knowing what was wrong with him, he was so strong, such a little fighter. We explained to Nathan that Mark was sick, that his muscles did not work and he needed Nathan to help him play with toys and sing him songs. Twinkle Twinkle was his favourite.
After the diagnosis we were in and out of the hospital another four times with one infection after the other. On his fourth hospital visit Mark got an NG tube to help him take fluids and his milk. We were discharged to Robin House, the children’s hospice in Balloch, he was so sick, we thought he wasn’t going to make it during our stay there. He had lost so much weight from being unwell and from not eating. Mark started to pick up while we were at Robin House and when we left there after 5 days we felt confident feeding Mark with the NG tube as well as daily chest physio to assist coughing to move secretions.
We enjoyed using the hydrotherapy pool at Robin House, we could all go in as a family and Mark could move his arms easier in the water. Mark also really enjoyed bath time at home. He would have a couple of glow sticks in his hands, we would set up the disco ball and switch the lights off, he loved it. Nathan would go in with him and squirt water at Mark and us with all his toys, it was a really fun time.
We brought the bipap home and Mark would take his naps on it and a few hours during the night, although when he was well he would not tolerate the bipap at all.
On leaving Robin House we decided to only have our immediate family visit. Mark was too unwell to be passed round guests all the time and it was important for us, Nathan, our parents and brothers and sisters to have the time with Mark. It was the best decision for us.
Once home, we gradually increased his feeds and he was well. We made every second count with Mark, we had so much fun, we took him to baby sensory classes that he absolutely loved, we took him on holiday to Crieff Hydro with the grannies and granddads, he came to the park with his big brother and much more. Mark had a smile for his mummy, daddy and big brother everyday. He hated to be apart from my husband and I, if we left the room he would cry, if someone else held him he would keep his eyes on us to make sure we were not going anywhere.
We got Mark’s hand and foot casts made, fingerprint jewellery and lots of hand and foot painting. We took photos and videos every day. Mark’s favourite toys were balloons. He would shout into them with his daddy and we would play catch (with some assistance of course). We would fill some with helium and wrap them round his wrist which he loved to wriggle out of and watch them float to the ceiling.
Although Mark had been diagnosed with this devastating illness we smiled every day with him, we laughed every day with him, he laughed with his brother playing dinosaurs, it felt like a happy bubble in an all too awful reality.
We took Mark to Crieff Hydro in Perth with our family. Mark took unwell while we were there and was hooked up to his oxygen and on his bipap. This time it was different, his breathing was slow, it had never happened before.
We came home after our break was over and Mark started to get better, but he was weaker, he was growing so fast and another infection had weakened him. Nonetheless daddy and the boys made mother’s day fabulous, they got me beautiful gifts and we played together.
The following week, for a change in Scotland, we had a sunny spell so Kevin said ‘lets have a barbeque’ it was set for Sunday. The immediate family came over, the sun was out and there was lots of food. Mark was laughing at his brother and his cousin splashing with water in a bucket and getting lots of hugs from his grannies. I was singing ‘horsey horsey’ to him and he was smiling away.
Mark’s uncle took him for a cuddle and I went for something to eat, about 15 minutes later he came over because Mark had gone pale. We knew.
Mark passed away at 17.15 on Sunday the 25th March 2012, in his mum and dads arms, after a wonderful day with our family.
It is so unbelievably sad. Our baby of 9 months old was gone. No more of those special cuddles. All the preparing in the world could not prepare us for this feeling of emptiness, loss and pain.
We kept Mark in the house for the week leading up to the funeral. Nathan saw him in his little coffin and we would watch Nathans dinosaurs DVD in our room together as a family. Nathan said he would be a superhero and fly mummy and daddy into the sky to go get Mark back. Nathan was going to go in his rocket and carry him back because his muscles didn’t work so he would need to carry him.
Nathan came to the funeral mass and sat with his cousin at the back. It was a beautiful service, we carried Mark in his coffin until the final moments we had to let him go. Kevin said a few words about Mark, it felt really special and so fitting for our special baby.
The following day we went to Marks grave and Nathan let a big blue balloon go for Mark and we watched it float high into the sky where Mark could catch it in heaven.
We are so glad we had Mark. He has enriched our lives, he has made us treasure every moment, every smile, every laugh,
Sadly missed, always remembered.
Kevin, Kerys and Nathan McPhee.