Caroline’s Story (Syndactyly and Polydactyly)

We are Caroline and Justin Hughes, a couple living in England, with a son called Kaiden, who was born with Syndactyly and Polydactyly.

Our journey started on the 19th February 2014. We were feeling nervous, the day had come when we were to meet the doctor who would assist us through the process of IVF. We arrived at the private clinic in Bath, England, not really knowing what to expect, other than a discussion about IVF and ICSI. Our doctor, Mr Walker talked us through all options and we decided there and then that it was something that we wanted to go through. Because my menstrual cycle had just started we were able to start treatment that day. After a delay of 2 weeks, we were ready for egg collection. On the 10th of April 2014, 18 eggs were collected. We hoped they would all get to blasto (5 days) stage. However, 3 days later, we were down to 5 embryos and they wanted to transfer 2 that day. So on the 12th of April 2014, 2 embryos were transferred and we were now in the dreaded 2 week wait. Feeling excited yet impatient, we tested early and got a positive result. How many had taken? Were we having one or two? Girls? Or boys? When would our baby be due? The questions were endless.

It was soon confirmed that one embryo had implanted – we were going to have a baby and we were due on Christmas Day!

We had several scans during the pregnancy and each one brought excitement and joy. “Everything is normal,” said the sonographer. “One digit, two digits, three, four and five.” A perfect count from 1 to 5 for each hand and foot. Relief!

At 26 weeks pregnant, I went to our local doctor’s surgery to have a routine injection – whooping cough vaccination. After it had been administered by a nurse, she immediately realised she had made a mistake and had in fact given me a meningitis vaccination instead. I was panic stricken! What effect would this have on my unborn child? Will there be any long lasting effects? The questions were never ending! Our questions were unanswered, all we kept on hearing was that it would be safe as it’s an inactive vaccination. The worry continued.

As the pregnancy progressed and the size of my baby increased, I developed SPD (symphysis pubis dysfunction). I finished work early and spent the final two months of the pregnancy taking it easy. Mobility was difficult and getting around was a challenge, but the use of crutches helped ease the pain and discomfort in the short term.

At 37 weeks, we went to see our consultant. Because of the SPD, it was decided that I would have an elective caesarean. The date was booked, Christmas Eve 2014! Yikes! A week before I was due to have the caesarean, we had a phone call to say that our date was changing … we were going to have our baby in 3 days’ time – 19th December 2014.

The next few days were a blur!

On the morning of the 19th, we rechecked our hospital bags. Did we have everything? We left around 7 am and arrived at our local hospital. We were on the afternoon list so the morning felt like a life time! Finally it was our turn to go to theatre. We were so nervous, yet excited.

At 3.45pm, our little miracle baby boy was born. It took 45 minutes before we met him. He was taken away and met with the paediatrician, who in turn had called another paediatrician to come and evaluate Kaiden (we didn’t know this until later). After 45 minutes, the paediatrician came to talk to us. “Your son is healthy but he has been born with abnormalities to his hands. Were you aware of this from any of your scans?” We replied with a confused no. The nurses brought him to us and we were instantly shocked at the severity of his hands. How had this happened? Why didn’t the scan pick this up?

We were referred to another hospital and within 3 weeks had an appointment with Dr Lee at Bristol Children’s Hospital, Bristol, England.

We were so anxious. What would they tell us? Would they be able to help him? When will surgery start? What would they do? How will his hands look? Dr Lee was amazing! He talked us through everything. Kaiden would have to return to the hospital to have scans taken in another 6 months’ time. Dr Lee would then assess the X-rays and tell us, that day, what he planned to do.

We are now almost at the end of those 6 months. We are looking forward to Kaiden having the x-rays and know we will soon have a plan of action.