My name is Tasha and I’m 26 years old. 5 years ago, I met Tj a man who would change my life. This is my experience with VHL as a partner and mother. Warning I’m a rambler so well done if you get to the end.
2012 – I met TJ and had my first experience with VHL. ‘What’s that?’ I ask about the semi-circle scar on his belly. ‘It’s my shark bite” Tj joked. Weeks go by till he reveals; I have VHL. I’ve lost 2/3 of my kidney, had a brain tumor taken out, a tumor removed from my cheek and one removed from my eye. Wow. I’m not even sure I had anything to say. As soon as he left I got on google.
2013 surprise pregnancy. This led to many many discussions on testing for VHL during pregnancy. We didn’t and had a beautiful baby boy in 2014. Cord bloods were taken at birth for testing. We got a phone call at 6 weeks to say that it was going to be a little longer. At 8 weeks old I got the letter, this tiny helpless baby I had in my arms had VHL. When they needed the extra time my gut knew it. I felt guilty, like I had failed already at being a mother. We went for a meeting with a genetic counselor to see what the future would hold. Tj was 18 when he was diagnosed so this was going to be new for both of us.
We decided that PGD was the way forward to add to our family. PGD, pre-implantation genetic diagnosis, is where the embryo is tested for a genetic condition before being transferred back to the mother’s womb. To start PGD we needed a probe. After having samples sent around the country they had agreed that they were as confident as they could be they had identified the gene. A year after we started this we could start PGD. Little did I know PGD was going to be the hardest thing I had ever done; though anyone around me would argue that dealing with the hormonal mess I became was far tougher. It wasn’t a smooth ride. First round I had moderate OHSS, ovarian hyperstimulation syndrome. It’s a side effect to the fertility drugs where basically you feel like you have been to an all you can eat buffet eaten the whole lot so your stomach feels like it’s going to burst, your head pounds and you feel like you are going to throw up but you are so thirty you can’t stop drinking. Its ok it only lasts about a week but during this time having a two year old use you as a bouncy castle is not advised. To then find all embryos were affected. I hadn’t even considered this and was torn up. The wait for the second round seemed to take forever but we ended up with three VHL free embryos.
The first time I have ever seen Tj scared when I told him we could soon have four littles running around the house soon. More bad luck our first transfer we miscarried. So put everything in and transferred the last two embryos together. I was convinced it had all failed again after a bleed but one week after my birthday in September 2016 I saw one little heartbeat on the screen. We were pregnant again.
During this time Tj had been experiencing headaches, sickness and blurred vision. He was admitted to hospital for a week; no one was sure why his brain tumor was causing problems since it hadn’t grown. It was my first realization of what VHL was really like. His scans had been stable up until now, November 2015. All that I could think about was how am I going to explain this to our little boy.
January 2017 after a brain scan the consultant wanted to see us. Tj tumor had grown and it needed out, Tj was put on the surgery waiting list. Tj was getting more and more tired and taking more and more paracetamol but I think he was trying to put it to the side till our baby was born. April 2017, 38 weeks pregnant and Tj was in hospital with his brain tumor again. Once again his scan showed that his tumor hadn’t grown much and they were unsure where these symptoms were coming from. After a week in hospital he was once again sent home, I was now 39 weeks pregnant and had been scared this baby wasn’t going to meet its dad. Two days later we had another baby boy. Due to the tiny 2% chance of PGD not being accurate we had cord bloods tested again. Thankfully they showed he is VHL free.
March 2018. We have had regular scans and everything has remained stable. Tj still manages the pain with paracetamol and is still waiting for his operation. It’s hard to explain to our now four year old and he calls the tumor Terry. Around appointment and scan times I try to make it seem as normal as possible. He starts school his September and he will start to realise that he is different. I’m sure there will be lots more questions too. The hardest thing is not showing him the fear but not to give him false pretence everything will be ok.
We talk about VHL openly but always in a non-negative way, there are no secrets in our house. As much as I want to forget it exists I can’t and when we have to face it we will together. VHL is going to affect our family for the rest of our lives.
I couldn’t be prouder or luckier to have this family. VHL has taught me to live life, no regrets and to make the most of every day. If I ever feel sorry for myself I remember the strength Tj shows and suck it up. If I have half his strength I’m doing well.
Tasha
Partner and mother to VHL patient
Sep 8, 2019
