BEING A UNICORN: LIFE WITH HALF A UTERUS

EMOTIONAL, INSPIRING, LOVE & MARRIAGE, MOTHERHOOD, PREGNANCY, BIRTH & BABY'S

Wow wow wow. This story is a rollercoaster ride to read: and then you remember it’s Helen’s actual life and are blown away but an incredible example of how sometimes the human body can defy all the odds:

·     The desire to one day be a mother was the one constant in my life growing up.

 

·      I met my now-husband age 18, at the beginning of Freshers’ Week. It was love at approximately third sight, and we’ve been together ever since.

 

·     By the age of 27 we had just bought a house, had good jobs and the time felt right to have a baby. I fell pregnant immediately. My daughter was perfect and lovely, but her total aversion to sleep meant that her 3rdbirthday had come and gone before having another child even felt logistically possible, let alone desirable.

 

·     A sunny Italian holiday and a few too many glasses of prosecco, and I was pregnant again, before we’d even really decided to try. But the timing seemed auspicious, we were in the process of buying a bigger house, 4 years seemed like a nicely manageable age gap.

 

·     2 days before moving house, I went to the toilet and noticed some spots of blood. A morning googling reassured me that this was very common and nothing to worry about, and I carried on packing boxes. Until the pouring blood which didn’t need a diagnosis from Dr Google to tell me it was definitelysomething to worry about.

 

·     The next day I passed something which may have been a large clot, but I know in my heart was our baby. It was buried by my husband under the rosemary bush (rosemary is for remembrance, apparently) in our old garden, and the next day we moved house.

 

·      I was guilt-stricken in case the exertions of packing were what had caused me to lose the baby, but my GP was reassuring. It was nothing to worry about, very common, we could try again.

 

·     Losing that baby had crystallised my slight broodiness into an intense and visceral longing for a second child. 

 

·     A few months later, we were on holiday in France, and I realised my period was late and my boobs were sore. I decided to put my A-level French to the test by purchasing a pregnancy test (Teste de Grosesse, FYI), which was positive. 

 

·     But a couple of days later, back at home, with my husband now away on a business trip, I started having stomach cramps. This time there was no blood. That had to be a good sign, right? Well, no, actually. The pains intensified. I phoned my parents. My mum took me to A&E.

 

·     A&E was hell. The nurse barely looked at me as she dipped the pregnancy test into the plastic cup of my urine. “You’re not pregnant now” she declared, “If you ever were.” I crumpled, and I’m so grateful for my mum taking over and pointing out that, a home test taken just the day before had shown I was pregnant, I was in excruciating pain, and nearly fainted every time I stood up, so there was clearly a problem and I needed to see a doctor. The emergency gynae doctor was much kinder. 

 

·     A blood test showed pregnancy hormone. I was given an injection of painkillers, cannulated, told not to eat or drink and to prepare for possible surgery for an ectopic pregnancy. I was lucky. Comparatively speaking. My pregnancy wasn’t in my womb, but it wasn’t in a fallopian tube either. It was, in medical speak, a PUL – pregnancy of unknown location. As it was still a very early pregnancy they decided to manage it expectantly, so I avoided surgery and just had to go to the hospital every day for a week to sit in a room full of pregnant women and have a blood test to confirm that the level of pregnancy hormones was falling not rising. They fell.

 

·     Four months later I was pregnant again – my third pregnancy in the space of a year. I had an early scan which confirmed that the baby, a tiny dot with a beautifully flickering heartbeat, was in the right place. Then I started bleeding. I went for an emergency scan. The sonographer confirmed that the baby had a strong heartbeat. The bleeding was nothing to worry about. She reassured me that a healthy scan at this point of pregnancy meant a 97% chance of a healthy baby being born in 7 months time. That was good enough for us. We went home and started talking about baby names. It was Easter Sunday. I was resurrected.

 

·     At my next scan, which I felt was purely a formality, the doctor doing it became quiet and serious. She told me something about the sac measuring too big and the baby too small. She booked me for a repeat scan in 2 weeks time, and handed me a sterile container. “Try and catch the product in this if you miscarry before then. We’ll do some tests on it”.

 

·      I spent two weeks in limbo. Still feeling pregnant, sick, tired, hyper-emotional, but knowing that the chances were I was never going to meet the baby making me feel like that. Two weeks later there was no heartbeat. I had an ERCP operation the next day (the charmingly named Evacuation of Retained Products of Conception) and I was referred to the Recurrent Miscarriage Clinic at St Mary’s Paddington.

 

·     We stopped ‘trying’ for a baby while we waited for the appointment. But, grief-stricken and longing for a baby, I don’t suppose we were as careful as we could have been, and twice during that few months wait I had what is known as a ‘chemical’ pregnancy – you conceive, produce pregnancy hormone which shows up on a test, but then your period starts just a couple of days late, and perhaps a little heavier than usual. 

 

·     A scan at our first appointment at St Mary’s seemed to show something odd about the shape of my womb. I was booked in for investigative surgery. 

 

·     About 18 months after my first miscarriage, I came blearily round from the anaesthetic to find a young doctor standing at the foot of my bed holding a clipboard. “Now, my notes show that you have one child, born at 39 weeks, but I am assuming that’s a mistake.” I shook my head. “No, that’s right. My daughter. She’s 4.5 now.” His eyebrows shot up. “Really? That’s remarkable. After what we’ve seen today I wouldn’t have believed it possible for you to have a full-term pregnancy.” My heart sank like lead, and the nausea wasn’t just the result of the anaesthesia.

 

·     “You have a unicornucate uterus. It’s very rare. Basically, half your womb is missing. It causes a lot of problems with pregnancy – early miscarriages because the embryo can’t implant properly, and late miscarriages or stillbirth because the foetus basically runs out of room.” 

 

·     So there we had it. The source of my heartbreak was a birth defect, in me not in one of my babies. I have a unicornucate uterus with a rudimentary non-communicating horn, which I always think sounds vaguely insulting. My right fallopian tube floats uselessly round my abdominal cavity unconnected to anything else. According to what I read I had a 50% reduction in my chances of becoming pregnant, and, if I did conceive, only a 30% chance of carrying a healthy baby to full-term. It wasn’t that we had been unlucky in our quest for a second child, it was that we had been extraordinarily lucky in how easily I conceived and carried our first.

 

·      I reeled from the shock. My initial response was grief for the second baby I thought I would never now have. After losing so many pregnancies in such a short space of time the thought of trying to conceive another one, with a 70% chance that that too would end in heartbreak seemed, well, inconceivable. 

 

·     Then we had our follow-up appointment, this time with the head of the clinic, the amazing Professor Lesley Regan, one of the leading experts in the world on recurrent miscarriage. She was brisk but very kind, and I owe her so much. I asked if she thought I would ever have another baby, and she nodded emphatically. “Of course you will. Your body has done it once, it can do it again.” She was, however, no-nonsense in her approach to our idea that we should wait a few years, allow me to recover physically and both of us mentally from the miscarriages, enjoy time with our eldest daughter. It was of course, she said, up to us. But I wasn’t getting any younger in reproductive terms (this was the month before my 33rdbirthday), and her view was we should ‘get on with it’.

 

·     She explained that, once I conceived, I would need an initial scan to confirm the pregnancy was in the right place – ectopic pregnancy is a known risk to unicorn women. I would then have fortnightly scans for the first twelve weeks to check that my cervix was coping as a small womb can put undue pressure on the cervix. Then for the remainder of my pregnancy I would have 6 weekly growth scans to check that the baby wasn’t running out of room. I would have to deliver by c-section (as I had with my first, unplanned) because the shape of my womb meant that the baby’s head would never be able to engage properly and natural labour would be virtually impossible.

 

·     We left her office feeling hopeful. We walked through Hyde Park. The snowdrops were starting to come up. We held hands, and talked about our lives, and what we were already lucky enough to have – each other, our gorgeous girl, our supportive families – but also, what we wanted. The chance to hold our newborn baby in our arms again. The chance to make our daughter a sister and our family complete. Then we decided to take Professor Regan’s advice and get on with it. Not there and then in Hyde Park of course. 

 

·     Six weeks later I was pregnant. The test that confirmed this was taken on Easter Saturday. A second chance at resurrection? This baby seemed to have an affinity with religious festivals – her due date was Christmas Eve, and I was pretty sure she had been conceived on Mothers’ Day. 

 

·     My pregnancy was intensely stressful. I took nothing for granted. From very early on my husband developed a calm certainty that this baby was ‘the one’, the sticky one, the one we would finally get to meet. I couldn’t let myself believe that. Every scan, every appointment, every visit to the toilet, every ache, pain or twinge was a source of worry. My mood was on a scale that ran from anxious at the lower end to panic-stricken at the top end. 

 

·     The calm elective c-section didn’t happen as we planned, because my daughter couldn’t wait. Twelve hours before it was scheduled I went into spontaneous labour. It turns out that Professor Regan was right – after 14 hours of labour with contractions coming every 2 minutes, I was the grand total of 0.5cm dilated – natural labour was not going to work. I had an emergency section. I still couldn’t stop worrying.

 

·     She was born, perfect and beautiful and healthy and everything we could have hoped for. Four years, and a diagnosis of PTSD and health anxiety later, I am still worrying. Treatment for those conditions as helped a lot, and I am starting to believe that my miracle baby is real.

 

·     My dreams of a large family will never come to pass. I am 38 now, and I know that I could never cope mentally with the strain of another pregnancy, let alone physically. But I am lucky. I am so, so lucky. My unicorn uterus has given us the magical and miraculous gift of two incredible daughters. And, funnily enough, my youngest daughter, my rainbow baby, is obsessed with both rainbows and unicorns. Magic.

 

 

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1 Comment

  • Reply Anna Griffiths March 24, 2019 at 11:53 am

    Wow. I also have a unicornate uterus but unfortunately had an ectopic in 2011 that ruptured and I lost my tube. We have had 7 cycles of IVF and I have not been pregnant since the ectopic. Breaks my heart. We have 2 more embryos left and pray that one of those will be our rainbow. Thank you much for sharing your story. It often feels like I’m the only one with this condition. I’m super glad you got your happy ending xx

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