Gemma’s story of her perfect boy Henry x

I like to believe that everything happens for a reason and when we found out we were pregnant in August 2019 and due in April 2020, it felt like everything was falling into place. The usual worries that come with early pregnancy were in full swing but the excitement around being pregnant and the experiences of morning sickness (more like all day sickness) were reassuring signs.

The 12-week scan felt like a lifetime away and we were counting down the days to see our baby for the first time. I was excited and nervous for the scan and when our name was called to enter the scan room it all felt very surreal. The sonographer had trouble getting a clear picture at first, my bladder was too full! And after a couple of trips to empty my bladder halfway (I have no idea how you know when your bladder is emptied halfway) it was time to see our baby. The relief when you hear those words of ‘there is your baby’ was the best feeling. But this feeling came crashing down when we heard the words ‘I don’t like the look of your baby’. Now I’m not sure if these were the exact words but it’s something that I can’t get out of my head. At this point the tears were streaming down my face as the sonographer explained that our baby’s stomach didn’t look right and as she named several conditions and chromosomal disorders, I remember squeezing Richard’s hand. After some bloods were taken, we drove home and all that pregnancy excitement had gone. Shortly after arriving home, one of the consultants rang and gave us a further scan appointment in two week’s time, to give baby some more time to grow. This was reassuring and when it came to the further scan, we spent over an hour seeing our baby wriggling around on the screen and everything felt ok again. Two consultants reviewed the scan and there were no concerns over our baby’s stomach. Then after another scan two weeks later to check, our initial scare had gone. Our baby was active and growing, no more worries and time to look forward to the 20-week scan. This was when we started sharing our exciting news and I started to enjoy the feeling of being pregnant and embracing my small bump.

We had already been on a roller-coaster of emotions and we calmed ourselves for the 20-week scan in December. We had the same sonographer as the 12-week scan and I pushed aside any worries and eagerly looked at the screen. We asked to know the sex of the baby and he made it easy to see – we were having a boy. The sonographer then went quiet and we could see various different images on the screen and then she said she needed the consultant. We stayed calm, as we had gone through this before but this time it was different. The consultant came in and again everything was quiet, Richard stared at the screen, I counted the ceiling tiles and the consultant and sonographer spoke in hushed whispers. I caught the odd word – thoracic being the word that I kept hearing. This was when they turned to us and said our little boy had a large lesion in his spine and his brain wasn’t developing properly. We were then directed to a room and the consultant sat down and confirmed that our little boy had severe spina bifida. I don’t know where the strength came from at this point, but I needed to write everything down and have all of the information that the consultant could give me. I typed everything on my phone, and I don’t know if I was in shock, but I felt very calm. The consultant explained the location of the lesion – between the thoracic and lumber regions of his spine, the swelling building up in his brain, causing the cerebellum to develop into the wrong shape, the mobility issues that they could see already, his legs and feet were already turning inwards and the question mark over how his internal organs would function. Then came the part that no-one wants to hear, the options and we could tell in the consultants voice the option which would be best for our baby. With the word severe used at every suitable moment and the uncertainty of development, we knew that our little boy wasn’t destined to be with us. Richard and I didn’t need to say anything to each other, we just knew what decision had to be made and with that we decided on his name – Henry Sanderson.

By this point the logical part of my brain had taken over, I had to be strong for my little boy and for Richard. We started planning and gathering all of the information that we needed to be informed and to support our families. Both of our families live in England and we wanted them to have the opportunity to meet Henry.

The week from the scan to the next appointment to start the journey of meeting Henry felt strange, my bump suddenly felt strange, it was as if Henry knew what was going to happen and he was protecting me. We started to prepare. There was nothing online to tell you what to take to hospital and the information given to us was all medical. But we knew that Henry needed something and that something was a small cuddly toy. We headed to the shops and stood in front of the baby/toddler section of a local gift shop and spotted the perfect gift for Henry – a small cuddly dog. We bought two, one for Henry and one for us. In the days leading up to Henry’s birth, we cuddled both of these dogs at night so that our smell would be on the dogs for Henry.

On Friday 13th December 2019, we drove to the hospital and entered the Tulip Suite of Ninewells Hospital Dundee, a special suite created for families going through a loss. We arrived with our entourage and settled in for the night. The midwife went through all the details with us and the next step in meeting Henry began. By this point I had read and re-read the leaflet about the medications and what would happen several times, and of course the leaflet says ‘most women’ will go into labour during the first couple of rounds of medication. So, we were all thinking, midwife included, that Henry would be born at some point during the night or maybe early hours of the morning. No. Turns out I’m not most women and Henry had his own schedule of when he wanted to be born. This was a good distraction, as with each shift change, we saw a new midwife and it was comforting to talk over the details and Henry’s story each time. By Saturday evening we were wondering when Henry would make his appearance but no, he needed a little longer and I think we all did. The midwives were all wonderful and our midwife for the Saturday night spent the evening with us, talking about Henry and helping us to prepare with what would happen next. She showed us the Moses basket and blankets that Henry would sleep in and the memory boxes that we could choose from. We’ll never forget her gentleness with us and that evening I felt a change in my body and part of me knew that Henry had gone to sleep. Sunday morning came and the midwives and consultant were concerned that nothing had started, this scared me, but I didn’t need to worry as by the afternoon my body was ready.

Henry Sanderson was born sleeping on Sunday 15th December 2019 at 7.36pm.

He was perfect in everyway possible. Every feature on his face was perfectly formed and it was amazing at 21 weeks how you could his fingernails, cute button nose and large feet. When he was born, the midwives commented on his large feet and having size 7 feet myself, I wasn’t surprised. We weren’t scared to look at him and we needed to take in every detail of him. His mouth was slightly open, a homage to me, a fellow open mouth sleeper. He looked peaceful and that was important to us. As Richard and I had time with Henry alone, we decided to look at his back, to see what spina bifida looks like on the outside. His legs and feet were turned in and you could see how his feet were developing in that way. We had seen on the scan the black space where the lesion was and in real life, running down most of his spine was a thin layer of skin, almost like a balloon, the size of it shocked us but also reassured us that we had made the right decision for Henry.

Everyone had their time with Henry and in the evening, we lay in the hospital bed and read him stories. A suggestion from a close friend of mine, to choose a book (I chose 4!) to read to him. Being a primary school teacher, I find comfort in picture books and enjoy reading to children, so it was important for Henry to have that opportunity to hear his mum read a story or 4.

The emotion of everything hit when we left the hospital the next morning and the thought of leaving Henry there was unbearable, but we knew we needed to. Our phones were filled of photographs of him and his little toy dog was snuggled in my pocket. We left him with his little toy dog and a poem written by Richard.

Henry is forever in our hearts and his little toy dog is always by our side.