On 4th December 2013 our little miracle was born, Zachary Alex. After two miscarriages and Zac being a threatened miscarriage, we thought all our prayers had been answered the day Zac arrived. Little did we know what was to come.
At first all appeared to be normal, although looking back, feeding Zac was always problematic. At the time we just thought Zac was a slow feeder and put it down to Zac having a tongue tie which was later clipped. Gradually the problem with feeding became more pronounced, Zac did not seem to feed like other babies. Together with feeding issues, we noticed that Zac did not move his legs very much, always had his head turned to one side, suffered with constipation, hated tummy time and struggled to lift his hands above his head. This was reported to the GP at 10 weeks and we were told to go back in 4 weeks time.
During those 4 weeks waiting to go back to see the GP we became increasingly worried. The day we returned to the GP, all hell broke loose. The GP took another look at Zac, we explained that the situation was the same and whilst Zac was putting weight on he was dropping several centile lines. The GP asked us to leave the room whilst he made a phone call to Broomfield Hospital and before we knew it a letter was being typed for us to take to the hospital immediately. A Neuromuscular Paediatric Consultant examined Zac and asked various questions. One of the things he asked was whether there were any concerns about Zac’s movement whilst in the womb. The Consultant said that one of the possible reasons for Zac’s lack of movement and feeding issues was Spinal Muscular Atrophy (SMA) and a blood test would be necessary to confirm this one way or another.
The day of the results came approximately two weeks after the blood test was taken (in April 2014) and our lives changed forever. The diagnosis of SMA was confirmed; Zac had Type 1 SMA (for us the worst possible outcome). An appointment was arranged for a couple of weeks later with a Consultant at Great Ormond Street who was a specialist in the field of SMA. He dealt a further blow; Zac was on the severe spectrum of Type 1 which meant he had a life expectancy of 7 - 8 months. At the time Zac appeared to be relatively well despite having a lack of movement and all breathing being through his tummy. We thought that there had been some kind of mistake.
We were quickly introduced to the Community Nurse team at Broomfield Hospital who came round weekly to assess how Zac was getting on. It was also suggested that we think about visiting Little Havens Children’s Hospice for support with respite, although we would stay with Zac at the Hospice. Visiting the Hospice was a big step; this was not the place where anyone wanted to go. However, it was surprisingly nice – very homely, friendly staff, great facilities including a sensory room, ball pool, garden, swimming pool and sauna. The worst part was being shown round what they called the ‘Woodland Suite’ the room where Zac would lay after he had passed away, something we would never be ready for. Zac did however have some amazing experiences at the Hospice and it enabled us to be supported at the same time. We stayed with Zac at the Hospice a couple of times before staying again for Zac’s end of life care.
The Community Nurse team supported us with various things including Zac’s feeding. Feeding was becoming a real issue, we had to massage Zac’s feet, sing to him and constantly take breaks to get him to take the bottle. Over the May bank holiday it took just over an hour to feed Zac 1.5 oz of milk. Enough was enough, Zac was really struggling and so after the bank holiday, he had the feeding tube put down. This in itself was a heartbreaking moment, no more cuddles whilst feeding and everyone visually being able to see that Zac was a ‘sick baby’ from the appearance of the tube. We found getting to grips with the feeding tube was no easy task for us, but we got used to using the special paper strips to test Zac’s stomach acid before every feed. This was to check the tube had not moved and to make sure the milk was not passing down the tube too fast. At this point we started to become more like nurses than parents.
Quickly other symptoms started to appear, Zac was extremely clammy to the extent that he needed to be changed throughout the day and a lot of the time could only wear his nappy as he was so sweaty. Zac was put on medication to help with this and there was a great improvement. Next came the sickness, Zac started being sick on the first feed of the day but gradually this increased to sickness with every feed. It was not just small amounts coming up but what appeared to be whole bottles. More medication was introduced to help with this but it was difficult to control and therefore hard to leave the house. As Zac’s muscles were getting weaker it became harder for him to be sick. Many changes had to be made to his milk to try and get things under control none of which were very successful and eventually dioralyte was mixed in with the milk and that was how things stayed.
Zac would always be quite happy sitting in his rocker but suddenly he was no longer able to. He needed to lie flat as it was too difficult for him to breathe sitting up. We never wanted to be one of those parents who let their child watch television all day but inevitably this was what started to happen. Zac was not able to hold toys because of the muscle weakness so we engaged him with various sensory toys, as this was the only other thing he could do. We truly feel that Zac found all of this difficult as he always appeared to be an intelligent little boy who needed stimulation.
We were provided with a suction machine for Zac as he was unable to control the levels of saliva in his mouth as a result of the swallowing weakness. For such a little body, Zac had to cope with so much.
In between the devastation of watching our baby boy’s health deteriorate, we were offered genetic testing which confirmed that we were both carriers of the faulty gene resulting in Zac’s SMA. Knowing that your genes made Zac the way he was is a very hard thing to live with.
And so the end came... Zac started to turn blue when he had a build up of saliva which he could not clear. We took Zac to the Hospital and he was admitted for further investigation. Zac had to be started on oxygen. We were in Hospital for a total of one and a half weeks followed by the Hospice for a further two and a half weeks. Zac now needed regular morphine and sometimes a relaxant drug which was massaged into his cheek. We were told that Zac had reached the end of life stage. The last month was a sheer roller coaster, one day Zac would seem in lots of discomfort, then he would plateau for a few days and further deterioration occurred.
Sadly on 22nd July 2014 our little fighter took his last breath aged just 7 months, surrounded by his Mummy and Daddy. Zac gave us so much happiness and has left a deep hole in our hearts. We did our best for him in an impossible situation with the support of many family and friends. Our little boy is now Running in Paradise (RIP) free of pain. We will never forget his eyes that spoke a thousand words, his lovely placid temperament or his gorgeous smile. He was such a brave and determined little boy who will be forever loved xxxx