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A genderqueer person sitting in a hospital gown sitting in an exam room

BY Leo Hynett

Healthcare

Promoting Healthy and Safe Pregnancy for Sickle Cell Disease Patients
Navigating pregnancy when you have Sickle Cell Disease can be an isolating experience full of unknowns. Thanks to a new programme, it doesn’t have to be.

JULY 05  2022

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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!

People with SCD who are pregnant or considering parenthood 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?

These worries are understandable. Studies show that people with SCD are at greater risk of adverse pregnancy outcomes, such as premature labour, foetal growth restriction, and painful vaso-occlusive crises during pregnancy. To support

Eleven Health is launching a new programme to help answer some of these questions and offer support to families and clinicians navigating SCD pregnancy journeys.

 

Navigating pregnancy with Eleven Health

Using the FDA-approved Withings ScanWatch, Eleven Health enables people with SCD to track their biometrics throughout the day. This data is then compiled to build a clear picture of patient wellbeing both in and out of hospital. Individual data is combined with anonymised community data to predict flare-ups, helping patients plan for them and perhaps even avoid them altogether.

Their new programme will focus on monitoring biometrics and tracking patient-reported outcomes throughout pregnancy, providing health teams with key insights that will help them support patients and their babies. With enough participants, this information will help Eleven Health identify how pregnancy affects the body when you have SCD, and how SCD might affect outcomes for both the baby and the person carrying them. The hope is that this programme will help demystify what it’s like to navigate sickle cell and pregnancy.

The resultant dataset will help the Eleven Health team 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 info@eleven.health to learn more about getting involved!

 

Becoming a parent with SCD

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

Whatever path to pregnancy parents with SCD choose, Eleven can support them and their families through the process by helping them manage their wellbeing throughout. Tracking biometrics and recording outcomes will help manage symptoms and catch any abnormal readings early. This data will help them and their team prevent adverse outcomes, ultimately supporting them 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 a person has SCD and their partner carries sickle cell trait, this could be an option worth considering.

As well as these considerations about the health of the baby, there is a lot to consider about the wellbeing of the person who is pregnant. 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. Keeping a close eye on biometrics throughout pregnancy can help identify the early signs of complications and help patients promptly seek help.

Complications are more common in people with the genotype 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.

Every baby in the UK is offered a newborn blood spot test – also referred to as a heel prick test – when they’re 5 days old. This test checks for 9 different health conditions, including SCD. Finding out early if a baby has SCD helps everyone – including the family – plan for their care and enables health teams to offer the best possible support for the family.

 

Community support

Reia, Community Lead at Eleven Health, is currently pregnant and will be playing a key role in the new programme. She will be leading the way in tracking her outcomes throughout her pregnancy, regularly sharing her journey on the Eleven Health 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 dataset that will help the team learn more about how SCD affects pregnancy (and vice versa).

Pregnancy – and navigating that journey when you have SCD – can be a difficult topic surrounded by lots of complicated feelings, so Eleven Health hopes that sharing Reia’s journey will help inform and encourage positive discussion in the community.

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