27th February 2014 - 22nd July 2014
Our beautiful boy - Theo William - was born on the 27th February 2014; 9lbs of pure joy. After three unexplained miscarriages he was a much longed for child. I had a water birth, which was one of the most incredible experiences of my life. I remember so clearly the moment he was born; meeting him for the first time, although it felt like he’d been part of me forever. Those first few weeks were a blur of feeding and changing, bathing and cuddles, the usual first-time parent worries, and not much sleep! We loved every moment, and were totally overwhelmed with love for him. Theo was such a happy little guy, feeding like a trooper and so content.
At a routine appointment, when Theo was 5 weeks old, a health visitor mentioned that he seemed a bit floppy. She was worried about his muscle tone and wanted him to be seen by a specialist at hospital. I was uneasy, but Theo was happy and gaining weight - he hadn’t missed any milestones yet - nothing in the world could have prepared me for what would follow. The next day I took him to hospital. The first doctor who examined him tested all his reflexes, and he had none. I was immediately worried - he had passed all his newborn medical checks with flying colours, so something had changed. She wouldn’t venture a diagnosis apart from saying it was ‘significant’. Even at this point, it hadn’t entered my mind that Theo might die. They called my husband - a doctor himself - who was working in another hospital, so he could be there for a meeting with the consultant. She took bloods from Theo (something I think most mothers would find traumatic to watch), and though the diagnosis would need to be confirmed once the results were back from the lab, they suspected Theo had SMA Type 1. I had never heard of the disease, and had so many questions. It was a massive shock when we were told that most babies with this condition do not live to see their first birthday. It felt impossible to reconcile this death sentence with the happy smiling baby in my arms.
We spent the next few days in hospital, meeting various doctors and health professionals who continued to assess him and offered support and information. Friends came to visit, and my parents drove up to be with us, sharing in our shock and devastation at the news. Learning more about the disease from doctors and reading stories of other families online (on the SMA Support UK Website), was helpful but overwhelming. That he was going to die and there was nothing we could do to change that, was absolute agony. The doctors couldn’t say how long we would have with him - days, weeks or months. We were told that as his muscles got weaker he would struggle to swallow, to feed, to breathe. Though we were assured he could be made comfortable with morphine when the time came, I was terrified that he would suffer. We were told that at some point he would need an NG tube, when feeding became too difficult for him. The idea that he wouldn’t be able to breastfeed, either for fear that he’d aspirate, or because he became too weak, was desperately difficult for me to come to terms with. Breastfeeding is so bonding, and was such a comfort to him, I couldn’t bear the thought of that being taken away from us.
During our two night stay at hospital, Theo’s breathing had become more rapid, and when we were allowed to go home it was with an emergency care resuscitation plan. We had talked with the doctors about different scenarios and knew that we wanted Theo to spend his final days with us, surrounded by the comforts of home. On the advice of Theo’s doctor, my husband took time off from work in order to spend whatever time we had left, caring for him full time. We took Theo home, devastated, but desperate to savour every moment that we had with our beautiful boy.
Though Theo’s movement was so limited by SMA, there were many activities and toys that he could enjoy. He loved music; he had a little mobile over his cot and a musical play mat that brought him so much joy. He liked it when I sang to him or his Dad played guitar, joining in with gurgled noises. Though he couldn’t reach for toys or objects, he loved playing with helium balloons. We found that if we tied the string to his wrist he was able to lift his arm a little to move it - he did this with such concentration for a little baby! My husband built Theo his own sensory room with lights and bubbles and mirrors, so many fascinating things to look at - and a screen above his cot, so we could project YouTube clips of Sesame Street songs for him to watch.
He loved his daily baby massage sessions, and always enjoyed the bubbles at bath time too. I think the massage must have been soothing to his muscles and the water supported him in such a way that he could move a bit more than usual. We found the positions that were most comfortable for him so that he could enjoy watching what was happening around him. Best of all, he loved to be snuggled up for a feed or a nap in my arms. From a very young age he was so communicative - with his eyes, noises and smiles. There were so many things he wasn’t able to do physically, but he was so incredibly loving and he knew that he was entirely adored by us. I barely left his side for more than a few minutes.
We were supported by an amazing team from the hospital’s childrens’ community team. In the early days, Theo’s doctor would stop by every week or so to see how things were going. His nurse, who came to love and know him so well, was always available to talk through our worries and drop by with the medications that we needed. His physiotherapist showed us how to use a suction machine and we had tanks of oxygen delivered, ready for when it was needed. But Theo was still so happy, it was so painful sharing our home with all this equipment; horrible reminders of what the future would hold.
At one point, we were encouraged to go and visit a hospice for a couple days. I imagine it is different for everyone, but we really felt it wasn’t for us, and left feeling entirely sure that we wanted Theo to spend his final days at home where he was most content, with us caring for him. We were glad to have gone though as we were able to use the hydrotherapy pool and a magical sensory room, as well as time with a music therapist and a specialist masseuse. We were able to return to the hospice most weeks for an afternoon visiting the pool and using the amazing facilities.
We wanted to make as many precious memories as possible. Theo was Dedicated in front of our church family, and we made trips to visit family and friends while he was still well enough to travel. Every month, on his birthday date, we had birthday parties with cake and Prosecco to celebrate his life and our love for him. Through all of this, we knew that Theo would be susceptible to catching colds and that he might not survive a chest infection, so were really careful as we wanted to protect him from as much suffering as possible.
As the weeks progressed, Theo started having problems with his secretions, as swallowing was becoming more difficult for him. He was put on a small dose of hyoscine (in the form of a patch) to help manage this. As his difficulties became gradually more profound, the dosage was increased. At night, he would wake often - sometimes every hour - in discomfort. We would change his position which seemed to help, and he started having a very small dose of morphine before bed to help him feel more comfortable. I found giving him morphine especially difficult that first time. We weren’t at the end yet, but his decline was so gradual, him needing these medicines was a concrete sign that things were deteriorating.
His feeding habits changed too. Unlike other babies with SMA, who apparently tend to feed for short amounts of time, Theo obviously took great pleasure in his food, it just took him longer to get a full tummy so he would often feed for an hour or longer at a time. Where he had been up on the 90th percentile on charts, his weight began to plateau. Theo started to have ‘blue episodes’ too, where he couldn’t breathe and needed urgent suctioning. It was unbearable witnessing him in such distress, but love enables you to do things that you couldn’t imagine being able to face. He was so brave and so stoic, and was always quick to settle and smile again after an episode.
In the last few weeks of his life, going out for our daily walks to the park or popping into town to meet friends for lunch, became too difficult. Theo wasn’t comfortable lying flat on his back in the pram, and had grown too big and become too floppy to be in the sling. He was needing to be suctioned more and more frequently, and though the equipment was transportable, he was happiest and most comfortable at home. His doctor and nurse visited more frequently, sometimes very late at night or early in the morning. By this point he was needing morphine throughout the day and night, and the dosage kept being upped in order to stay on top of his discomfort.
In the end, he only needed extra oxygen and an NG tube for the last week of his life. I had been pumping extra milk in preparation, but was dreading the feeding tube. It was a relief that he was still able to latch on for comfort, but we would give him extra milk through the tube at the same time as a breastfeed, to ensure that he was hydrated and had a full tummy. The tube also enabled us to give his medications much more easily. It was only the last day of his life that he didn’t have a feed from me, but by this point he was so sleepy from the morphine that I know he didn’t miss it.
In those final days, we knew that the end was near. His breathing had become more and more laboured, one of his lungs had collapsed and he was on a lot of morphine. That last evening he became really lucid for a few moments - looking at us and smiling, trying to talk to us with his little sounds. He fell asleep, and we stayed awake all night, taking turns holding him in our bed, singing to him and telling him that we loved him thousands of times. He died in his sleep, cradled in my arms the next morning.
His doctor had forewarned us that often people are surprised to find the first few weeks after a death are somehow manageable and after the funeral, when everybody else gets back to their normal lives, the full force of grief hits you. It’s not that we weren’t desperately sad immediately, but looking back, we were still in shock and there was so much to organise and plan. There are so many choices after someone dies, and it is perhaps an area society isn’t very comfortable talking about. We chose not to have undertakers as we wanted to do everything ourselves. We were able to take Theo’s body to the hospice where they had special cold rooms, where we continued to care for him over the next few days. We put him in his casket, which was hand-crafted by a carpenter friend, and closed the lid ourselves. No parent should have to do this, but we wanted to do these things ourselves. Before, I might have thought some of these choices were strange, but it seemed entirely natural and wholly appropriate for us, and helped us to say goodbye to him more gradually.
Theo was buried across the road from my parent’s home, where I grew up, with just a few of our closest family. A few days later we had a big memorial service, with beautiful readings, tributes and songs. It was achingly sad, but an incredible testament to his life and the love that he inspired.
There is not a moment when I don’t miss him, or a cell in my body that doesn’t feel the loss. Theo was the most brave and tenacious, sensitive and focused, happy little man. From my favourite line, of my favourite of his books, Theo, ‘You are loved, You are loved, You are loved.’ (Nancy Tilman, Where ever you are, my love will find you).