My complete molar pregnancy and her twin brother
December 2013. Life was perfect. We had just celebrated our beautiful baby Lillie’s christening and were very much looking forward to our first Christmas as a little family. Amidst the anticipation, excitement and frantic gift buying, I had an inkling I was pregnant again. A test confirmed it…we were expecting again! Two days later, yet more amazing news arrived: my brother and sister in law announced their second pregnancy too!
Christmas day arrived, as did the winter sniffles and we coughed and spluttered through gift-opening and feasting. As everyone recovered, I still felt ill with pains in my ribs. Concerned we were having an ectopic pregnancy, I went to get it checked. The doctor reassured me that I’d likely just pulled a muscle and that I needed to rest. I tried to continue as normal, but things got harder. I looked heavily pregnant though only several weeks had gone by. I couldn’t bend to pick up my little girl without pain.
Just before New Year ’s Eve, I still felt unwell: I was tired and sickly, and nothing tasted right. I started bleeding so I rang our local maternity unit who booked me in for a scan the following week when I would be 6 weeks. When the day arrived, the scan revealed nothing untoward. The bleeding could just be implantation at such an early stage in the pregnancy.
However, as the weeks ticked on, I continued to feel dreadful. My flu-like symptoms intensified, my energy levels plummeted, I coul hardly breathe and the bleeding worsened. Another scan revealed that the baby was still there; a beautiful heartbeat thumping away. The midwife suggested that such heavy bleeding may have been caused by the miscarriage of a twin. Only time would tell.
On the day of our 12 week scan, we waited anxiously in the waiting room for what seemed like an eternity. When we were called, we were almost paralysed with fear. We took a deep breath and walked slowly to the scanning room. Almost instantly, we could see our baby’s heartbeat. What relief! But our joy was short-lived. Within seconds, we knew that something wasn’t quite right when the sonographer said that she couldn’t get the measurements she needed and would need someone else to look. We looked at each other, holding hands. We would love our baby regardless. No matter what they tell us, this baby is ours and will be treasured. Whatever the problems or complications, we will face them together because we are a family….
The second sonographer came in and looked carefully at the scan on screen. ‘We think your having a molar or partial molar pregnancy where baby has too many chromosomes. Even when it’s removed, it can return…’ She continued to talk, but I heard nothing. This can’t be right. I can see my baby. It looks perfect. It has a heartbeat. It cannot be poorly. My mind wouldn’t let me make sense of anything.
We were taken to another room to see a doctor who talked to us in more detail about molar pregnancy. I had bloods taken as a raised hcg can help confirm it. We were given an appointment for a few days time which gave us more time to let the news settle, and for us to read up on what was happening. It was a long few days.
Finally the day arrived to see the consultant. By this point, I’d had time to digest what I was told but I had so many questions that I needed to know the answer to. Is the baby OK? What will happen next? As I laid there being scanned, I could see the sorrow in her face as I asked over and over if the baby was OK. The baby appeared fine; but the molar was very large. After an hour of scanning, observations, and tests, he consultant needed time to look everything over and so, once again, we waited.
She came back explaining she had rang Sheffield and spoken to someone there for specialist advice as it was rare to see molar pregnancy. She explained that the baby looked fine but that molar was causing my health to suffer. In all my concern for my baby, I never once stopped to think of how poorly I had become. She wanted me to stay in hospital for my safety : if I had a massive bleed, my life was at serious risk. She advised that we had little option than to end this pregnancy as the baby would slowly be squashed by the molar if it hadn’t killed me first. My hcg levels were 1.39 million, causing preeclampsia, thyroid problems and bleeding.
Only a few months ago, we were on cloud nine: how on earth can this be happening? I had to stay in hospital on my own, without my partner; without my daughter. I’d rarely ever left Lillie and not ever overnight. My tears were constant. Tears of guilt, fear, loneliness. I’d muster the strength to stop them, the some kind-meaning visitor would ask how I was and they’d start again. Most didn’t understand it and so I had to explain, over and over, what was happening. Some friends did their research so they could support us as best they could. Each day would be filled with visitors. But they left. And each night, I was trapped in a room with only my nightmarish thoughts to consume me.
14th February. The day of surgery. The greatest Valentines present we could have been given was the knowledge that our baby was safe and well. But no. All we could pray for is that I would survive and still have a womb, since a hysterectomy may have to be performed if the bleeding couldn’t be controlled. 9am. I was taken down to surgery to remove contents of my womb. I kissed my hand and lay it on my tummy. Goodnight baby, mammy and daddy love you.
I woke up. ‘I am alive,’ I thought. The relief hit me. Then came the doubts and the questions…. ‘Do I have a womb?’ Luckily, it was a complete success and no hysterectomy was needed. The next day, we were sent home to recover. My blood was low but with a good diet and iron tablets to supplement, they were happy that this would steadily rise. As I recovered ,the results from the labs came back confirming twin pregnancy: one complete molar pregnancy and one healthy baby boy. My HcG levels needed continual monitoring through urine tests to make sure they returned back to 2 or less.
The first urine test from the hospital came and it was sent off on Friday. However on Monday, I had a heavy bleed. I went to the hospital where they ran a series of blood tests. They asked if I could be pregnant to which I said no, not a chance. The bleeding slowed so we were allowed home. The next day, a nurse from Sheffield rang explaining my hcg was up and they would like me to go down for further testing, explaining that i may need to start chemotherapy. The consultant then rang to say that if any bleeding started, I needed to go to A&E immediately and they would take me by ambulance to Sheffield. I quickly packed bags for me, Dave and a few bags for Lillie to stay with nanna and granddad. We were in a whirlwind once again, my mind raced away. Leaving Lillie was so difficult, especially since we didn’t know how long I’d be there for.
My dad drove us to Sheffield a 2.5 hour journey. They carried out more tests: bloods, ultra sound scans, womb, liver, chest xray. We were told I had gestational trophioblastic neaoplasia. It was in my womb and in my lung: chemo needed to be started. My iron was low so I needed blood transfusion too. After that, I had my first methotrexate injection. This was followed by a recovery tablet. This was repeated for 8 days before a day off and then the whole cycle then repeated. The staff were incredible, from the cleaners to the doctors and so staying there was not as difficult as it could have been. We told my nephew and goddaughter we were away for few days so we went looking for postcards and presents for them. I chose not to tell them as even as adults, we struggled to understand and unless I really had to I didn’t want them to know so they didn’t worry. With this chemo, you don’t lose your hair and so I could keep it from them. Luckily though only the first two needed to be given in Sheffield then I could have the rest at my local hospital so I could get to be with my little girl again.
We came home in time to celebrate my goddaughter’s birthday …I was so grateful for that. I enjoyed her party though my mouth started to break down with ulcers upon ulcers. I couldn’t even give Lillie a kiss for the pain. I was completely devastated but if it meant I’d get better then so be it. I would put up with it. I did get pain relief for it but nothing did the trick.
Trip 2 to Sheffield. They took my bloods and we had a chat about how I’d been. The doctor decided we should change treatment to actidemicine (actiD). This is iv but still shouldn’t cause hair loss. I was so pleased: Lillie’s first birthday was coming up and I wanted happy memories to treasure and not have a poorly mouth. This new treatment also meant you just had one treatment day so I didn’t have to to and fro from hospitals.
As my levels fell, it started to take its toll on my body. I had aches and pains and I began to feel rougher and rougher. Then 5 treatments in, instead of continuing to decrease, my levels rose. I was devastated but everyone remained positive about it saying it might be a one off so it was suggested that we continue with treatment for now. If the levels remained up at the next visit, a combination treatment would need to be started and with that comes hair loss. Luckily it was a blip and my levels had gone down by the next treatment.
The next treatment began much like the last: the testing, the chats. We went shopping while we waited for chemo to be ready and while we were there we got a phone call to say my levels had dropped to 2! Those next two hours were fantastic, phoning Dave, my mum, brother, friends and family to share this amazing moment! After this day, I only had two more treatments to go! The lower the hcg got, the worse the side effects got but knowing you only have so much left keeps you going. I still kept on passing tissue for a few weeks but after having my first period this stopped.
I planned my sister in laws baby shower for when my treatment would be finished, giving me something to focus on. Although by now, Lillie was pretty good at keeping my busy… she was walking all over, climbing in everything! Then the last treatment was done. No more chemo. Though I was over the moon, my anxiety still lingered: what if it comes back? What if I need more? The first 6 weeks was a worry but then you start to truly believe its gone and start to get back to feeling yourself. After ten weeks I could dye my hair….hoorah!
It’s then though that you start to think about all that has happened. You have to come to terms with losing babies and having chemo. People around you all think it’s over, but inside you still have hurdles to climb. You don’t want to upset those you love either. That’s where my friends at Mummy’s Star helped. It was amazing to talk to people without the worry of upsetting anyone or feeling like you’re going on about it. My beautiful niece was born days after my due date. She filled all of our hearts with love and reminded us that life is precious and to be treasured. Lillie loves her baby cousin so much and hopefully she will be a big sister in the future. You are advised to wait a year after chemo to try for another baby, in order for you to heal both physically and psychologically. When we were first told that it felt like an eternity but that year is nearly here. We think of our babies everyday. The milestones are the hardest, but they remain forever in our hearts. Here’s to a bright future for us all.xx