I have tried to write this sooo many times, but every time I put my phone down it disappears. So now that the dog is having a nap, I can finally actually write it. This will be the hardest one to write, the memories of what actually happened and how we made the choice to have a TFMR.
Many people still won't understand why we did what we did, but I want you to know that it was purely done out of love for our baby and nothing else.
The Tuesday after we drove 3.5 hours to Southampton hospital, they have a really good fetal medicine unit there that could actually tell us what was wrong with our baby. We saw a doctor, and she was amazing, she was very thorough with the scan. Me and my husband joked that she was like a wizard with the machine, a magician to show every nook and cranny of the baby. We were not told at the previous scan what sex the baby was, so she asked if we would like to know and said 'yes it's definitely a boy'. This was so strange to me as I was CONVINCED it was a girl, I was seeing 3 magpies everywhere and all of the wives tales led me to believe I was carrying a girl. But low and behold, I grew a little boy.
After the scan we were took into a room, the doctor explained everything to us. That he had severe open spina bifida, and because of this his cerebellum hadn't formed properly and he had an excess of fluid on his brain. She explained what life would be like for him if we were to carry on with the pregnancy, that he wouldn't be able to walk, or sit, or stand. He would have no control over his bowels (meaning he would be in a nappy his whole life). He would have to have a shunt in his brain (a tube that releases the fluid into his tummy), that this would be done as soon as he was born, and the fluid will only get worse. The amount of fluid in his brain would also cause brain damage, he would struggle with speech, concentration, and everything that a child should be able to do. He wouldn't be able to enjoy life, smile, laugh, play in the park, get up to mischief when he was a teenager, none of that. None of the things you long for your child to experience. And if he was to live for longer than 4 years old there would be no quality of life.
Obviously, the doctor could not tell us the decision to make, but there was one. We would carry on with the pregnancy, the fluid would build up massively (causing more brain damage), he would go straight into surgery to have a shunt fitted, and have no quality of life or, we terminated the pregancy. I know that many parents choose the life, which is completely understandable. For us, though, this was one of the easiest and toughest decisions we've ever made, we knew that we did not want a life of pain for our baby boy. We told the midwife, and she said she would call us the day after just to 100% make sure that is what we wanted, so we went home. Here is our final scan photo, a little kiss from him.
The way home was horrible, knowing that soon we would no longer have our baby. On the way home my husband said to me "maybe we should call him Luke", we were always going to have Luke as a middle name after a friend that had passed away in 2017. I thought that fit him perfectly, my little angel up there with a big angel. Perfect.
I was not expecting for the appointment to be made so quick, the midwife called the day after and said we can be booked in for the day after that. Thursday. I would have to take some pills that would stop him growing and to go into labour on the Saturday. I didn't want my pregnancy to end, I loved that little boy more than anything and for him to be gone so quick was awful. I spent the next two days with my hands on my tummy, feeling him kick and move around. That happy little boy feeling nothing but love.
Now I'm sat here crying, it's hard to think about that time. Sometimes I want to shove it to the back of my head and forget all about it, I beg for it to not be real. But it is, and I know many other parents go through what we've been through, if not worse. I am so lucky to be surrounded by people who have shown me love, my husband has been my absolute rock and I cannot thank him enough for how he is been through this.
I was thinking about starting a YouTube channel, to show what life is really like after baby loss, that it is okay to be grieving the way you are. But I'm not sure, what do you think?
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