Analytics and PROs: promoting healthy and safe pregnancy for SCD patients

As Sickle Cell Disease (SCD) care improves, more and more people are reaching ages – and life stages – where they’re ready to grow their families. In fact, in the UK there are now approximately 110–200 pregnancies in women with SCD every year!

If you’re someone with SCD who is pregnant or considering parenthood, you will undoubtedly have a lot of questions; how will being pregnant affect my pain? Will my crises be more frequent? What effect will my SCD have on my baby? What about medications?

Studies show that people with sickle cell are at greater risk of adverse pregnancy outcomes, such as premature labour, foetal growth restriction, and crises during pregnancy. It is essential that biometrics are monitored throughout to provide your team with the necessary data to support you and your baby.

To support families and clinicians in navigating pregnancy journeys, Eleven Health is proud to be powering better pregnancy outcomes and helping demystify what it’s like to navigate sickle cell and pregnancy. We are excited to share that we’re launching a brand new programme to explore pregnancy and SCD. Capturing health data around pregnancy will enable us to answer these essential questions, help us build a better understanding of where care is excelling, and evidence where care can be better.

If you have SCD and are currently pregnant, considering becoming a parent, or have given birth, contact us at info@eleven.health to find out more about getting involved!

Becoming a parent

Deciding to become a parent is exciting, but there’s a lot to consider – even more so when you have SCD. It’s advised that you find out your partner’s status (whether or not they have SCD or carry Sickle Cell Trait) so that you know the chances of your child having sickle cell too. This will help you make the best possible decision for you and your family and give you the opportunity to discuss any concerns with your health providers. What you decide to do with this knowledge is completely a matter of your personal choice.

Whatever path to pregnancy you choose, Eleven can support you and your family through the process by helping you manage your wellbeing throughout. Tracking your biometrics and recording your outcomes will help manage symptoms and catch any abnormal readings early. This data will help you and your team prevent adverse outcomes, ultimately supporting you through a safe and healthy pregnancy.

Pre-implantation Genetic Testing (PGT) is a special form of In Vitro Fertilisation (IVF) where embryos are created outside of the body and only embryos which are not affected by SCD are placed back into the womb. NHS statistics show that about 1 in 3 cycles of this treatment will result in a baby; if a couple completes the process and has embryo(s) suitable for transfer, there is about a 50% chance of pregnancy. So, if your partner carries sickle cell trait, this could be an option worth considering

As well as considering your baby’s health, it’s key that you consider how pregnancy will affect your health too. People with SCD are at higher risk of pre-eclampsia and pregnancy also carries an increased risk of sickle-related complications such as crises, pain, and acute chest syndrome. Studies have found that 28.5% of women with SCD develop a crisis at the time of delivery.

Complications are more common in people with HbSS than HbSC, with HbSS posing a higher risk for maternal mortality, preeclampsia, and stillbirth. The ​​British Society for Haematology guidelines on the management of SCD in pregnancy recommends vigilance in all SCD pregnancies, regardless of genotype.

Newborn screening

Every baby in the UK is offered a newborn blood spot test – which you might also hear referred to as a heel prick test – when they’re 5 days old. This test checks for 9 different health conditions, including SCD.

If you have sickle cell (disease or trait) and know your partner’s status, you should already have a good idea of what the possible outcomes of this test might be. Finding out early if your baby has SCD helps everyone – including you – plan for their care and offer the best possible support for your family.

Sharing stories

We’re delighted to share that Reia, our Community Lead, is currently pregnant! Reia will be regularly sharing her journey with the community on the Eleven site and hosting events for members of the community who are pregnant, considering becoming parents, or have given birth.

Reia will continue regularly tracking her outcomes on the Eleven Health platform, forming the beginning of a valuable data set that will help us learn more about how SCD affects pregnancy (and vice versa).

We are aware that this can be a difficult topic surrounded by lots of complicated feelings, so we hope that sharing Reia’s journey will help inform and encourage positive discussion around pregnancy in our community!

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