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Personal Stories

Caroline on GSD Giant Sportive

The story of Baby Edward

A small question mark in my mind has been how would GSD6 affect my chances of falling pregnant and having a healthy baby. After we decided to try for a baby I shared my concerns with my doctors at UCLH. On the GSD Facebook forums there seemed to be no one with GSD6 who had given birth. UCLH advised that GSD should have no impact on falling pregnant and hopefully little impact on the baby, however there were some ways we could prepare.

Making preparations

I underwent continuous glucose monitoring to get a stronger sense of how I was managing my sugar levels throughout a 5-day period. This came back positive with any worrying lows only after periods of exercise alongside fewer carbs. With this knowledge behind us we were confident that the risks were low. I conceived in October 2017. To give the baby and I the best chance of progressing healthily UCHL advised to increase the amount of cornflour before bed and start monitoring my glucose levels and ketones daily, I also undertook a second 5-day continuous monitoring in my second trimester.

My antenatal appointments were managed at Kingston Hospital. I was the first case of GSD they had come across and so intriguing to the midwives and consultants! My consultant was fantastic and happy to support whilst letting the UCLH specialists and myself take the lead. Kingston Hospital proposed extra scans every 4 weeks to ensure the baby was growing as expected. Fortunately, both the glucose, ketones and growth scans showed every sign that both the baby and I were healthy and developing as expected. It was lovely to have the reassurance that things were on track.

The next hurdle was labour

Labour is notorious for being a long draining event! It often causes nausea and can prevent you from eating. Would I have enough energy to continue through a lengthy labour? The plan was that I should monitor my blood glucose levels once an hour during labour and should my glucose drop below an agreed level I would be given an IV drip. This was proposed by UCLH and supported by Kingston Hospital.

Healthy baby Edward arrives.

At 40 weeks they suspected I had Pre-Eclampsia (PE), this was not thought to be related to my GSD. The advice for a baby at term where PE is suspected is to be induced immediately as if this should develop to Eclampsia it can be life threatening for mother and baby. Often induction comes with a risk of a longer labour, as such I was concerned but the risk of not taking this route were too high for the baby and myself. Indeed, my labour was on the longer side at 60 hours, but I could eat and drink until quite far in. We had in our hospital bag an array of snacks and sugary drinks. With this my blood sugar levels never dropped below the agreed level and an IV drip was not required.

A healthy baby boy

On July 15th at 8:31 we welcomed baby Edward into the world. He is a thriving baby and shows no signs of being impacted by GSD. He is now 8 months old and having learnt to crawl and climb is getting into all sorts of mischief! I owe a huge degree of thanks to the partnership of UCLH and Kingston Hospital. Equally for the additional monitoring, advice and support which I believe helped lead to a very healthy, happy baby boy.

Caroline is AGSD-UK’s GSD6 Coordinator.