My Molar Pregnancy

As many of you know Ethan was born at 26 weeks, so I'd accepted that there would probably be some complications for my second baby. But life was about to throw another challenge at us, and this one was much tougher than I ever could have imagined. I’m sure that most (if not all) of us parents in the NICU community have a deep sense of fear when it comes to having another baby, there's nothing harder than watching your tiny newborn fight to survive and we'd give absolutely anything to avoid going through that again. I'd never wanted my kids to be far apart in age, maybe a couple of years at the most, but that very real possibility of another NICU stay made us wait. Balancing life in the NICU with another child at home is tough on everyone and we figured it would be easier to cope during those long months in hospital if Ethan was a little older.

It had taken us nearly a year to conceive the first time so I was shocked to get a positive test just a month after we decide to try again. I quickly called my midwife to book my first appointment for baby number two, and on a Friday afternoon we headed in for the 8 week scan, blissfully unaware that something was terribly wrong. In the darkened ultrasound room and with hushed voices, we learnt there was no sign of our baby or a heartbeat, all while our toddler Ethan sat on my husband's knee happily looking through a picture book. The technician seemed confused and suggested I'd mixed up the dates, so she told us to wait and talk to my GP the following week. Instead of leaving the clinic carrying that treasured image from what should have been our baby’s first scan, I left feeling empty and in desperate need of some answers.

Of course sitting around waiting for an entire weekend isn't particularly easy to do and I spent far too many hours trying to make sense of it - I was 100% certain of those dates! I anxiously trawled the internet for an explanation, reading up about all sorts of possible scenarios yet still clinging to the hope that it was a terrible mistake and our baby was ok.

Finally it was Monday morning and my doctor called with a referral for a blood test to check my hCG level (that's the pregnancy hormone). She’d seen the scan results and told me it was possibly something called a molar pregnancy, but in her 30-ish years of being my GP she’d never had a patient with one so it was extremely rare. The moment I got off the phone I had to check Google and my heart sank as I read through clinical definitions and people's personal stories. Some of them sounded like click-bait headlines - things like "I thought I was having a baby, but it was cancer", but the outcome of each story were all the same. Molar pregnancies are complicated and never have a happy ending. The next day my blood test results confirmed it, with a very high hCG level of 263,000 and a bunch of blobs on my ultrasound, I had a complete molar pregnancy.

If you’re reading this because you’ve had a molar pregnancy, I’m so sorry for your loss and everything you’ve had to go through. If you haven’t heard of it before, this is a basic explanation:

Molar pregnancies are sometimes called hydatidiform moles, occurring in approximately 1 in 1,000 pregnancies. There are two main types and they come under the group of Gestational Trophoblastic Disease (GTD). A partial molar pregnancy usually has 3 sets of chromosomes (triploid), the baby starts to develop but the pregnancy isn’t viable. For a complete molar pregnancy the chromosomes are diploid, having no chromosomes from the egg but double from the sperm. It forms a bunch of cells which continue to grow and gives the illusion that you’re still pregnant. In extremely rare cases a molar can exist alongside a twin, usually the pregnancy will have serious complications and isn’t able to make it to full term. Some molar pregnancies can become persistent (Gestational Trophoblastic Neoplasia), or develop into a malignant cancer called Choriocarcinoma.

The complete molar pregnancy (CMP for short) explained my rapidly growing ‘baby belly’ and extreme morning sickness - despite taking the maximum dosage of anti-nausea meds all I could keep down was plain white toast, steamed rice and water. At what should have been 9 weeks I looked like I was well into my second trimester and couldn't fit into my jeans. I hated having all the pregnancy symptoms but knowing that instead of a baby a huge bunch of cells were effectively taking over my body.

My first appointment was at the hospital where we met with my lovely gynae nurse Susan. She outlined what was to come, a couple more checks and definitely surgery (because otherwise the molar tissue would keep growing), weekly blood tests and then she'd contact me each week with the results until I was in the clear. One final ultrasound and my D&C was quickly scheduled - I was feeling so sick and that day couldn’t come around fast enough!

Following the D&C I needed blood tests for a minimum of 8 weeks. Testing hCG is the best way to monitor the molar cells, your level needs to get back down to zero as quickly as possible and any increase is a sign the cells are growing back. Complete molar pregnancies have about a 20% chance of becoming persistent GTN and spreading like a cancer, if that happens it takes chemotherapy to destroy them. Of course I hoped like anything I would not be in that 20%. Every week I went for my blood test, waited for my nurse to call with the result and noted down the number.  From starting at well over 250,000 it was dropping quickly – 4,500 – 1,400 – 650 – I was smashing out big drops and made it all the way down to 210! Then Susan rang with my next result and it was bad news, my hCG had gone back up to 310.

The next few weeks were a whirlwind, appointments with a gynae oncologist and a whole lot more tests. There were chest x-rays to make sure my lungs were clear and to use as a baseline, a full body CT scan and another ultrasound to look for re-growth. Nothing was found, so wherever those cells were hiding they were still small and hopefully wouldn’t need too many rounds of chemo. I say hopefully, but by now I was preparing for the worst case scenario because luck certainly wasn't on my side. I was going to start on low-dose methotrexate (mtx), each round being a cycle of 8 days on, 6 off. From the time my hCG reached 0 I’d then need 3 precautionary rounds just to be certain it was gone. All this time I kept track of those numbers creeping back up, reaching 4,100 in the 3 weeks before beginning chemo.

Each day Ethan and I made the trip across the bridge to Auckland Hospital, he charmed the staff with his cheeky smile and super curly blonde hair, and was the ideal distraction for me as the nurse jabbed the little syringe of mtx into my upper thigh. The chemo itself was relatively OK and I had minimal side effects, a metallic taste and being sensitive to the sun was as bad as it got. Finally I had a bit of good luck, only 2 rounds later my hCG hit negative! After 10 weeks and a total of 5 rounds of chemo I was finished.

While the chemo treatment ended up working well, emotionally I was a wreck. Who would’ve thought that a pregnancy could actually form a random mass of cells, tricking your body into believing it’s a baby? They never teach you about this sort of stuff in sex-ed class and it certainly puts a whole other spin on the 'life begins at conception' anti-abortion argument. From the moment I saw those double lines appear on the pregnancy test I had so much hope and imagined what our new little baby might be like. Sure, I was a bit anxious that bubs might arrive a few months early like Ethan had, although with the care of the high risk team I should've been able to get a bit closer to term. But in just a couple of weeks my happiness of expecting a baby had been crushed, replaced with the pain of discovering this rare condition that might even become cancerous. Because of possible complications I wasn’t supposed to get pregnant for a year after having chemo - ripping apart my dream of our two children growing up close in age.

As someone who would frequently pass out during blood tests I’ve now had so many that I can just look the other way, I suppose that's one good thing to have come from it all! Instead of the test itself, going to the lab was actually the toughest part, and I'd have to prepare myself for it every time. Most days there’d be least a couple of pregnant women in the waiting room, then I’d be asked if I was pregnant before confirming my details and getting on with the blood draw. Now I don’t have any medical qualifications but seriously, do they have to ask about it when my form is clearly marked with ‘Tumor hCG’? And it wasn’t just a few blood tests either, the follow-up schedule for GTD meant a whole 5 years of testing lay ahead. I marked them all out on the calender, slowly crossing off the weeks and months until I could be free of this nightmare.

It seemed everywhere I went there were painful little reminders of what I should have had. Old friends and workmates would ask when I was planning on having a second baby, meaning well but not realising how much those questions and comments hurt. And as much as I wanted to tell them (or run away in tears) it was easier to make up a simple reply like “oh, not quite yet” then quickly change the subject rather than attempting to describe what I’d been through. As it is miscarriages are barely talked about, to explain a molar pregnancy is a really long, complicated story and I'm pretty sure no-one is prepared to have that conversation in the middle of KMart!

Everything about a CMP messes with your head, sometimess life can be incredibly cruel and unfair. I didn't feel like a part of the baby loss/miscarriage community because technically it could never have become a 'real' baby, but in my heart that's what I'd lost. The thoughts kept me awake and most nights I’d end up sitting in the lounge with a big box of tissues, crying so hard that I could barely breathe.

That first year after chemo felt like an eternity. Social media became a minefield - you never know when you'll open your phone to discover a pregnancy announcement, someone welcoming their baby to the world, or simple photos of friends' babies that would've been close in age to your own. Even though you do feel happy for them (and of course you never know what they may have gone through), each post is another reminder of what you're missing and how long you still have to wait before you can begin to try again. If this is you right now, please remember there's nothing wrong with unfollowing some people or taking a break until you're ready. Despite an estimated 1 in 4 pregnancies ending in miscarriage, and there being many couples relying on the magic of science and whole lot of luck to help them have a family, it's so easy to feel alone.

After one molar pregnancy the possibility of having another is increased, or the molar cells can even start re-growing because they can be triggered by a new pregnancy. It’s only a very small chance, but after going into labour at 25 weeks with my first, then having a CMP for my second, I know that a healthy, full term pregnancy is far from guaranteed.

“Life is tough, my darling, but so are you” – Stephanie Bennett-Henry

In the year following the chemo I launched Small Babies – my business kept me busy and gave me something to focus on. After making it through the CMP and then managing to have a successful pregnancy I’m now a mum of two boys, albeit with nearly 4 years age difference! I’m so thankful my youngest arrived safely and at full term, he’s a thoughtful and gentle little guy who has completed our family.