My Journey as a Wife and Mom of Von Hippel-Lindau Syndrome Warriors

My journey with von Hippel-Lindau syndrome (VHL) started in 2012 when I met TJ, and shortly after, we started dating. I was in my final year of university and things were great. Not long after we got together, I noticed a scar on his side which he joked about being a shark bite. He never told me anymore I never asked until a few months later when he told me he had VHL. He did not go into too much detail but I did my own research on this disease called von Hippel-Lindau.

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From then on he included me in all scans and told me what they found each time. He had been 19 when he found out he had VHL due to a swollen cheek. After going to the hospital for tests it was found he had tumors in his brain, kidney, and cheek. He was rushed to surgery for the brain tumor. Over the next year, the other tumors were removed as well, but this was all before I met him, so that is his story to tell.

After eight months of amazing dating I found out I was pregnant. We were both shocked and very aware that this baby had a 50:50 chance of having VHL, too. We decided not to test for VHL while I was pregnant; eight weeks after he was born he tested positive. Honestly I was devastated that he had VHL, but I realized that it could be a lot worse. He was a happy and healthy little baby boy.

We live in the UK, so the NHS funds PGD — preimplantation genetic diagnosis. We started this process straight away to try for another child. It took six months for a referral to the IVF clinic and a further three months for the probe to be made. We started the injections in August 2015. For our first round, all were affected with VHL.

We then had more bad news. Tj had another brain tumor that was growing quicker than expected, causing headaches, sickness, and he could barely stay awake. He spent a week in hospital for observation, but it remains a mystery. He was discharged, and within a few weeks, the symptoms eased off and he started to feel better again. That means back to a full working week and football on the weekends!

More great news in September 2016. Our PGD had worked; we were pregnant and at the eight-week scan baby is looking good. There had been three embryos without VHL. After a miscarriage with the first, we transferred two. One had not done what it was meant to when it was thawed but the last one had stuck! It was hard after the first miscarriage as it felt like VHL was destroying us and our lives. It gave me a huge amount of guilt that our first boy has this condition, yet I was going through all this so any other children didn’t have to. I had always wanted a big family and knowing we could not fund the treatment ourselves made me sad. This would be our last child if it all worked out.

I am now 23 weeks and things are still going well. We are looking forward to our newest spring addition. From all of this we gained huge amounts of strength. Our relationship is fortified. Somehow it was the point that made me accept VHL and that there would be bad with the good.

In the four years that we have been together Tj has not had to have any surgeries, but we know that there are sure to be some coming. His brain tumor is monitored every six months and check-ups once a year for everything else. One of the consultants once said, “You live as normal and leave the worry and treatment to us.” And that is what we do. Tj has regular check-ups and our little boy will start soon, but other than that, VHL does not stop any of us and we carry on as normal. Tj gets to travel with his job, which he loves; our little one is a thriving 3-year-old who is always laughing. In addition, I am expecting my second baby boy with the man I love.

I do not have VHL but I live with two VHL warriors. One has not yet started his battle and the other is 10 years in. I couldn’t imagine my life any other way. We appreciate every day and enjoy every minute. No matter what VHL throws at us, we will carry on this way. VHL will never control our lives.

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