The Wellbeing of Women

TOTAL RAISED: £17,313

Emily Benbow, 32, tells us how crucial care from the Harris-Wellbeing Preterm Birth Centre, Liverpool, saved her children, Ruby, 5, and Annabelle, 2

Starting a family should be an exciting, happy time for couples, but sadly for some, the straightforward path to parenthood isn’t always the reality. Emily Benbow, from Warrington, told us her story. “I bled for the first nine weeks of my pregnancy, and due to previous miscarriage, I was given extra precautionary scans at Warrington Hospital. By the time I was 12 weeks pregnant, all was well and my husband, Chris, and I were thrilled to tell family and friends our good news. At the 20-week ultrasound, we couldn’t wait to see our baby on the screen but our excitement dimmed when the scan revealed that the baby had a short femur, which the doctor explained could be a soft marker for Down syndrome. Both terribly worried, we were referred to a consultant for a growth scan two weeks later which showed the baby’s growth had slowed even more. Warrington Hospital couldn’t tell us what the problem was; in fact, we were given rather a bleak outlook and advised to consider a termination. Despite our fears, we decided to wait it out a little longer before we made any decision. Four weeks later, another scan revealed that the baby had hardly grown so they recommended an amniocentesis to check for Down syndrome and other genetic abnormalities. By this time, we were frantic with worry and had to wait several more days for the amniocentesis as I had to have steroids beforehand because of the risk of miscarriage the test poses. When the day of the test came, we were told that if anything happened, they wouldn’t try to save the baby. However, two days later, to our immense relief, we learnt that our baby was fine! I was 28 weeks pregnant when my care until the birth was transferred to the Harris-Wellbeing Preterm Birth Centre based at Liverpool Women’s Hospital, which is funded by Wellbeing of Women. It is adept at treating high-risk pregnancies but I don’t think I fully understood how serious things actually were because I felt so well in myself. There it was quickly confirmed that the baby had foetal growth restriction, which means that the placenta shuts down and starves the baby of essential nutrients it needs to grow and the blood vessels become too narrow and reduce the amount of blood that can reach the baby. I was closely monitored by the kind, supportive staff at Liverpool, with scans three times a week. Then, at 29 weeks I began to bleed heavily and my baby daughter was delivered within the hour by emergency Caesarean section. Ruby was 11 weeks premature and weighed only 820g (1lb 13oz) – she was tiny but perfectly formed. She was immediately ventilated and rushed to intensive care. Because I’m very short-sighted and didn’t have my glasses, I didn’t get to see her until the next day! It was quite surreal and it took me a while to get over the trauma of the pregnancy, the birth and the fact that Ruby was in hospital for three months. At 12 weeks, a week past her due date, we brought her home. By then, she was a thriving 4.5lb in weight. Ruby’s still small for her age – she’s five and wears age 3-4 clothes and has global developmental delay, which is common for children born very prematurely. It mainly affects her motor skills but she will catch up in time. I try not to worry about milestones because they don’t apply to Ruby, so we take every day as it comes.

After the birth, my placenta was sent off to be examined. It was found to be extremely unhealthy and I was diagnosed with an autoimmune clotting disorder called chronic histiocytic intervillositis (CHI). Simply put, the condition causes the placental villi to clot, which prevents food and oxygen travelling from mother to baby so that the baby’s growth slows or stops while in the womb. It’s very rare and there’s not a great deal of information available except that women with CHI have few surviving pregnancies.

Three years later, I became pregnant again and suffered a similar pregnancy with intense bleeding until 12 weeks. I was under consultant care at Warrington Hospital, praying that history wouldn’t repeat itself. This time, they told me the placenta was an odd shape, like a small hard ball, and again I was advised to have an amniocentesis test, which, thankfully, showed no abnormalities. At 24 weeks, I was transferred once more to the Harris Centre in Liverpool as an outpatient. I took part in the Strider Trial Study for early-onset intrauterine foetal growth restriction (IUGR), under Dr Andrew Sharp, a senior clinical lecturer in obstetrics at the University of Liverpool. It was a randomised controlled trial for dismal-prognosis pregnancies where either the drug sildenafil or a placebo was given to try to prolong the pregnancy and improve the outcome. I was scanned regularly until 28 weeks, when the baby reached 1lb in weight, and from then on was given regular cardiotocography (CTG) scans to check the heart and monitor distress. The scariest part was that I couldn’t feel Annabelle moving while I was pregnant and I was emotional at every appointment, fearing the worst, probably because of what I’d gone through with Ruby. Chris was very supportive despite it being as hard for him as it was for me. Over the next four weeks, the blood flow to the baby worsened, until Dr Sharp delivered Annabelle by C-section at 32 weeks. She weighed a mighty 2lb. Although a little small for her age, thankfully Annabelle doesn’t have the same challenges as Ruby, though it still took me a while to get over the birth. I was emotionally drained and had post-natal depression and needed months of counselling to get over the trauma.

The care given by the Harris-Wellbeing Preterm Birth Centre was fantastic. I can’t sing its praises enough. From my first appointment with Dr Sharp I felt my spirits lift – with a high-risk pregnancy it’s important to be able to trust in the care given. Nothing was too much trouble for the nurses in the foetal medical unit. They were always positively reassuring. I’ve since joined the Patient & Public Involvement Group at the Harris-Wellbeing Centre, where past parents and medical professionals discuss the support and research into preterm birth from a patient’s perspective. The staff are always interested to hear how the children are progressing and delighted to see them when we pop in to visit. In the near future, I’d like to volunteer on the neonatal ward with the possibility of studying to be a counsellor when the children are older. I’d relish the opportunity to put my own experiences to good use, help other parents and give something to this wonderful, life-saving charity.

The Wellbeing of Women – the facts

  • Wellbeing of Women provides information and funds medical research and training for midwives and doctors to improve the health of women and babies. It works hard to raise the public’s awareness of the health issues affecting women of all ages.
  • The charity has contributed to many life-changing developments including IVF, foetal scanning, vitamin supplements in pregnancy and cervical cancer screening. Its grant award programme supports high-quality research and funds the research careers of the brightest young gynaecologists, obstetricians and midwives.
  • Research in the drug hydroxychloroquine (HCQ) is underway to treat foetal growth restriction (FGR). The drug could help to alleviate FGR, providing a new treatment for the one in 20 pregnancies in the UK, and millions of pregnancies worldwide, that are affected.
  • Visit wellbeingofwomen.org.uk for more information.

The Candis Big Give

The £17,313 raised in The Candis Big Give is being used to fund research into using the drug hydroxychloroquine (HCQ) to treat pregnant women suffering from FGR. This drug could help babies to stay in the womb for longer, which would increase their likelihood of growth and survival.

 

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