In April 2020 we had our 5 month baby scan for Esmé, in which spina bifida was detected. The initial advice that day was that babies with this condition generally go on to have a poor quality of life. With issues ranging from fluid on the brain, seizures, small or no bladder control and a lifetime in a wheelchair, as well as many other potential complications in between. The overall feeling Carrie and I came away with that day was that the opinion of the professionals was it would be best to carry out a termination. 

The following week we were sent to the UCL Hospital in London and the synopsis was not one of completely hopelessness, but that there were options and that Esmé wasn’t completely destined for a low quality life. We were given examples of children that do live happily with spina bifida, including children on the severe end of the spectrum. They also informed us of a relatively new surgery being offered to unborn children with spina bifida, where surgeons could repair the spine whilst Esmé was still in the womb at 6 months gestation, albeit there were huge risks to Carrie and the baby. Operating whilst in the womb gave Esmé a greater chance of not being as severely affected by the condition, although nothing was guaranteed.  Another safer option was to operate on Esmé after she was born. Given the risks, I tried talking Carrie into going for the safer option but Carrie was 100% certain and determined to give our baby the best possible chance in life and we went for the fetal surgery. 

At six months gestation in May 2020, we travelled back to the UCL Hospital where they performed fetal surgery on Esmé. The surgery was a complete success and we owe everything to Dr Emma Bredaki, Professor Jan Deprest and the whole 28 person team involved in the process. Carrie endured an extremely uncomfortable and painful few months leading up to the birth but on Thursday 13th August 2020, Esmé was born by C section, and within seconds she was kicking her legs about and peeing high into the air. I think Carrie was the 9th person in the UK to go through this miraculous surgery, and a nice caveat to that statistic is that we managed to cross paths with the couple that were the 8th. Carrie has kept in touch with them, and Esmé and Laura have met up together to play a few times and will continue to do so.

Esmé is nearly 2 now and has grown and thrived more than we could have possibly hoped for. She doesn’t completely empty her bladder so does have to be catheterised a couple of times a day but that is something that is now just a way of life. She’s also taking a little longer to walk, although she is gaining strength and confidence everyday so hopefully she’ll be keeping up with Forrest Gump before long. She is now walking with the aid of a walker from the physio, which gave me my idea for a charity challenge. 

I’ve been racking my brains for a challenge for myself to do for months but have realised I’m actually really lazy and the only challenges I’ve considered are ones that involved eating or sitting on the sofa for 48 hours straight. Now Esmé is able to move around I thought I’d put it on her to do the hard work. She’s going to walk from Clarence Pier to South Parade Pier in Southsea which works out just over a mile. She’s also turning 2 that day so she’d better finish the challenge or no presents. I have told her if I’m struggling she’ll have to put me on her shoulders. On a serious note, we really do want to give something back to a charity that helped us when we needed it, as well as raising a bit of awareness to future parents that get the same news as us that there are options and it’s not all doom and gloom.

Esme’s Pier to Pier Challenge; 

Saturday 13th August