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Patient Story 1: Extreme morning sickness:
This was my first pregnancy and the joke I couldn’t wait to tell this baby was how I knew I was pregnant with her mere hours after conceiving – because that’s when I started throwing up. At the time I didn’t know I was going to continue feeling and being sick right up to the day after we found out her heartbeat was gone; and that the day after having her at 16 weeks, I’d wake up feeling well for the first time in those 16 weeks. Physically well, yet utterly devastated. That contrast of the physical and emotional feeling is something I’m still struggling with now, 16 weeks later.
I know now that the extreme sickness was linked to the abnormally high levels of hcg hormone that comes with a partial molar pregnancy. Those first few weeks though, I took it as a great sign of a strong pregnancy and if I had to spend hours on the bathroom floor, throwing up even water and trying to live on dry Rice Krispies, then it was worth it for a healthy baby.
It seemed to take forever to get to the 8 week scan. Hearing the heartbeat and seeing the little jelly bean that matched my dates exactly just reinforced the idea that the sicker I was, all the better for the baby. A tiny, barely noticeable to anyone other than an expectant mother, bit of spotting two weeks later almost made the bottom fall out of my world. What reassured me that night was the fact I was still so sick. I went to sleep hopeful that the bleeding couldn’t mean the worst, if it did surely I wouldn’t be still sick.
The next morning, a reassurance scan was exactly that. There was the jelly bean going strong. Hearing the heartbeat again, hearing how good our odds were because we’d heard the heartbeat, sent me home feeling like we were invincible; this baby would be coming home.
The 12 week scan, just two weeks later, was the only appointment I wasn’t nervous for. Having had a horrific morning of being so sick, I was just looking forward to seeing the picture that made all of this worthwhile.
Instead of the baby I wanted to see, or even the jelly bean I had already seen, all that was in front of us was a snowstorm on the screen. I remember looking at Dr.McKenna and saying “I can’t really see the baby” and then the rest is a blur. I can still feel the panic and heartbreak but as I left the office the only thing I was really conscious of was that I was going home to wait for my baby to die.
The next few weeks are too painful to revisit and even if I could write it all down it would take days because there was so much going on. We were in hell and if you’re going through this or have come through this, believe me when I say I know your strength. Sending a woman away pregnant to wait out a pregnancy that isn’t viable is beyond cruel. For me it was a physical and mental torture. And I chose the word torture carefully knowing that to be tortured is to have your basic human rights violated. Follow up visits didn’t answer the why of what was happening, and everytime I heard my baby’s heartbeat but couldn’t see her through the snow, it gave me false hope and crushed me all at once.
We had an amniocentesis scheduled after the 15th week. I really dreaded that because it wasn’t going to change anything for this pregnancy and also I feared the very likely possibility that I’d need to throw up while the needle was in.
In the end, I didn’t need it. The scan showed something I had suspected myself because of a brief few hours of feeling well I had two days earlier. The heartbeat was gone.
Through the absolute and surprisingly fresh heartbreak of this, I remember noticing that on the screen showing my placenta, it looked like a cartoon drawing of a bunch of grapes and I knew that meant something about the pregnancy. Dr.McKenna confirmed this when he said he suspected a partial molar pregnancy. Now we had the reason why we lost the baby but we’d lost her so the reason meant nothing to me.
Again, even though I remember them hour by hour the next few days are too personal and would take too long to really go into. What is important for you to know is that when we went into CUMH a few days later to have our baby by induced miscarriage, every single person we encountered was amazing to us, and I really mean it when I say the nurses, midwives and doctors and the care they gave us were the light in the darkness for us.
Next day, having had the baby and immediately after a D&C to remove the placenta, I woke up feeling physically better than I had done in 16 weeks. My hcg had dropped from almost a quarter of a million to 1500 which accounts for this. It felt bizarre to be so physically well again despite the devastation of what had happened. Going home to ‘get on with your life’ after a miscarriage is uncharted territory as it is; after a partial molar pregnancy you are kept in the limbo between what has happened and moving on for a lot longer. In my case this meant having to have weekly checks of my hcg level to ensure they reached negative on their own. As I write this it’s taking almost as long as I was pregnant to get the levels to negative.
Most weeks walking in to the Early Pregnancy Clinic for the blood test feels like being kicked when I’m already down. Even though the nurses are all so lovely and you meet the same ones often, it can feel like you’re the white elephant in the room- the only one that’s not pregnant. The range of emotions is what you’d expect from a woman with rapidly changing hormones… or what you’d expect from a woman when the hormones aren’t changing rapidly enough!
The saving grace each week has been the nurses in the GTD centre. Because I have almost all my dealings with Caitriona, she deserves to be singled out here, but Orlaith has also responded to panicked messages and calls in just as caring and professional a manner. Caitriona is the one that calls me each week with the results and it’s honestly like having someone on your team so you’re not totally alone in the wait. The fact she knows your story and knows what those numbers mean to you counts for so much as you go through this.
For some of you I’m sure the numbers mean your own health, avoiding the treatment, or drawing a line under the experience. After the initial shock and grief for me, the numbers now mean when I can try again.
I’m lucky that the question of treatment hasn’t been too close to the surface for me and being so consumed with grief for the baby doesn’t allow me dwell too much on it.
Patient Story 2: Finding out I had a molar pregnancy:
Finding out I had a “Molar Pregnancy”
I found out I was expecting in late April, we were so excited as our little girl would be turning two in the November and the age gap would be great. I went to see my GP and they referred me to our local hospital Early Pregnancy Unit (EPU) as my cycle was all over the place and just to make sure everything was ok. I went to the unit and had a scan and the usual bloods checked everything was fine but they said the size of the foetus did not correspond with my period dates. I explained about my dates been all over the place, so the doctor said that they would bring me back again the following week and check bloods again. This happened for about four weeks and everything was fine, my hormone level was rising and the baby was growing, I had been dated as well and I was 12 weeks pregnant and my due date was the 6th of February so I was discharged from the EPU and given a date for my booking in. Everything was fine for the next few weeks. On what would have been my 15th week I started to get a pain on the lower left side of my back, I attended my GP and it was put down to muscular. I went to the hospital at the end of July for my booking in visit all excited with my partner. This was being held in the EPU as I had attended there in the beginning. I met with the nurse and got my bloods taken and was given my folder with all the details and little samples, everything was going great and I just needed to get my proper first scan.
As I lay on the bed, the nurse put the gel on and started to go over my belly. After a minute or two I looked at her and could see by her face something was wrong! She did not say anything but she called for the doctor to come in. In your heart you know somethings up. They then proceeded to do an internal scan. At that point they looked at us and said they were sorry they could not see a heart beat and explained about the colouring on the scan. My heart sank. I looked at my partner and just started to cry. The nurses were excellent. They gave us a picture and left us for a while in the cubicle. When we came out of the scan room the managing nurse of the EPU met us and took us to a room on our own. She was out of this world with kindness and explained to us that I had experienced a missed- miscarriage. I had never heard of this before. I suppose being naïve to any of it, I always had thought there would be signs of a miscarriage, a bleed, pain or something. She explained everything in great detail, gave me some booklets with information and told me my options.
I returned to the hospital and had to have another scan before I was sent for a D and C. I was told that I had been 16 weeks expecting. Everyone was so kind and understanding and could not be more helpful. I cried a lot when I came round from the anaesthetic. I suppose it was real then my pregnancy was over. The matron came to see me and was so kind she explained a lot of things to me about the different types of miscarriage and how my body would react after it. One thing I can remember clearly is her reassuring me that it was nothing I had done, that this happens to people, no matter how careful you are and that I would find a lot of people who had a miscarriage don’t speak about it, this is true! The number of ladies that have spoken to me since my miscarriage, telling me their story has really helped.
As the days went by, I waited hoping every day I would bleed and that maybe I could come back to some normality. After about two weeks I noticed some discharge and was really worried. I went to my GP and she did a swab and immediately I was given an appointment to come back to the EPU, as there is no clinic in my area that deals with miscarriage. This is so hard as you are looking at girls coming out with their scans all happy and your thinking that should be me, but the manager of the unit was so good, she put us in a separate room and we were seen straight away.
I had my bloods taken and when the results came back, the doctor explained to me that my hormone level had not come down, that this should happen after birth or a miscarriage, still oblivious to what it really meant I explained that I still had not bled since the my first initial D and C so they took me for another internal scan. The doctor told me that there was still product inside and that I would require another D and C. This is a whirlwind for anyone, two procedures in the space of a month and still not really understanding what was happening. I was discharged and given another appointment for the following week. On return my bloods were done and when we saw the doctor she explained that some of the product had been sent away for testing and that the results had shown that I had had a suspected molar pregnancy. She proceeded to tell me about a molar pregnancy. I was shocked and frightened as I never heard of this before. I think as a person when you hear the word cancerous or chemotherapy it really puts the blinkers on. The manager of the unit then explained about what would happen over the coming weeks and about monitoring my hormone level. She assured me about the unit in Cork University Maternity Hospital, that my details would be sent there and that they deal with Molar Pregnancies and are an excellent support unit for women going through this.
By now it was the beginning of September and I had to attend the EPU clinic every Monday for bloods. I was frightened because you’re not only getting over the loss of your baby but you are constantly worrying about the affects of a molar pregnancy. So your mind is really on over drive all of the time. The clinic in CUMH was excellent. I got a phone call from one of the nurses and she was excellent, reassured me that my local hospital was following all procedures and what outcomes there could be. I think it is great just to be able to ask questions and get answers that you can understand, it puts your mind somewhat at ease.
I attended the hospital for the next 6 weeks and had my hormone levels checked. The level started to move down slowly and I was discharged completely from the unit in October. It is a long road but there is great support available.
I will be forever grateful for the kindness shown by the midland regional hospital Early Pregnancy Unit’s staff and doctors and for the support given by CUMH.
Linda
Patient Story 3: Registration with the GTD Programme:
I discovered I had a missed miscarriage at 12 week scan. Baby had stopped growing at 8 weeks (previous scans at 5 and 7 weeks showed everything was normal).
2 days later I was admitted to CUMH as a day case and had an ERPC. I recovered well from this and no issues.
Approximately 5 weeks later I received a phone call from my consultant to say results from the lab were back and they showed that I had a ‘partial molar’ pregnancy. I had never heard of this type of pregnancy. They needed to ensure my HCG levels had returned to normal levels.
I attended the early pregnancy clinic in CUMH the next day where I was then registered with the GTD program. My bloods were checked for HCG and result was back within a few hours. The result was normal (<1).
This blood test was repeated 1 month later, luckily HCG levels was <1 (normal) so I was discharged from the clinic.
I was in contact with the clinical specialist nurses throughout the process and found them very helpful and supportive.
Patient Story 4: I had never heard of a molar pregnancy:
I had never heard of a molar pregnancy until I sat in my obstetricians office. My first pregnancy had been unsuccessful and I had a DNC. After prolonged pain and bleeding further tests diagnosed a molar pregnancy. I had no idea what it meant or how it would impact my life.
I met with Dr Coulter who explained exactly what the diagnosis meant. For most women a molar pregnancy will self correct. For a minority further treatment is required. Unfortunately, I was in the latter category and I would need further treatment. I will never forget the sonographers screen, confirming the molar pregnancy.
I began a long 6 months of methotrexate and blood tests. It was a slow process watching my hcg levels decrease. There was a few times when the levels plateaued, where I fear the dreaded Emmaco chemotherapy. Finally, I reached 0. All I had to do now was make sure I keep my monthly appointments to test my hcg and after 12 months I could try for a baby again.
Not to be. After 5 months I had the hcg of 9. I tried not to think much of it as the number was so small in comparison to the number I was used to. The following months the hcg levels continued to rise. During this time, Dr Coulter kept me up to date and I had regular blood tests and meetings to keep track of the levels. The numbers were so small but the fact that they would not decrease confirmed I would need Emmaco chemotherapy. It seems so vain, especially as this treatment would cure me, but the thought of losing my hair upset me more than the actual chemotheraphy.
As difficult as the realisation of the diagnosis was to come to terms with, the loss of my hair was on a whole different scale. I always had long brown hair and now I would have to wear a wig. Fergal and Vicki at Origin went over and above to guide me through choosing my wig and the inevitable shaving of my hair. I hated my bald head and what it signified. I no longer look like me because of the molar pregnancy. I dreaded looking in mirrors because I did not recognise the person looking back at me.
Dr Coulter and Professor O Reilly literally held my hand to prepare me for the chemotherapy. I bargained with them to let me wait a few weeks as my sister was getting married. The wedding was on a Friday and the following Monday my port would be fitted and on Tuesday I would begin chemotherapy.
Chemotheraphy treatment is gruelling but you do manage to put one foot in front of the other and every session is a step closer to the final date. In a funny way, it is your routine, you pack your bag for hospital visits. The nurses are truly amazing spirit, ironically you begin to look forward to your weekly catch up with the nurses. They are immense patience and understanding.
Although I had immense support from family and medical staff, I felt so alone. I am so happy that Cork has this amazing facility to help other women who are going through a molar pregnancy. Although the facility was not available in my time, I was lucky to have Prof O Reilly and Dr Coulter advise, council and hold my hand through the diagnosis, treatment and now thankfully recovery. As for my hair, of course it grew back! Exactly as before, with the cows lick at the side and a few more greys!
Patient Story 5: Silence of the ultrasound was deafening:
About this time last year I became pregnant with what was to be my third child. I remember experiencing severe morning sickness worse than on the previous pregnancies (I learned later this can be a symptom of partial molar pregnancy).
As I was so sick I announced my pregnancy early to my family on Easter Sunday (who had all guessed). Tragedy struck us the following week when my brother in law was killed in a work accident. Our world fell apart. The last time I saw him he hugged me so happy I was expecting.
Two days after the funeral I had to travel to the same hospital where he had died for my first scan. I cried as the nurse asked so how have you been. Following bloods I was brought in for a scan. The midwife chatted with us as she knew us from the other two girls. We filled her in on the awful tragedy of my brother in law.
I commented that scan is very quiet. I couldn’t hear a heartbeat. That sound of a beating heart is the best sound you will hear and that silence was deafening. The midwife asked was I sure of dates as it looked small. Tears started to roll down my face. She said she was having trouble getting a heartbeat. She held my hand. She comforted us as best she could. She said she had to ask another midwife to come in to check. She confirmed it was a missed miscarriage. Internal scan was done.
The midwife noticed some unusual cells on the scan and advised that they may need to do blood tests. I was brought to another room where we were comforted further by another midwife who took bloods.
My options were explained in full. I opted for surgery. I could return the next day. I decided to leave it till the Monday as my eldest had a ballet concert and phoned and left message with reception. I remember the midwife phoned me back just to make sure I was ok. I thought how kind of her to think of seeing how I was. On the Monday the doctor asked how was the ballet? Again he took the time to ask. He sat with us and answered so many questions and discussed the whole procedure. Like all the staff in Mullingar he was so kind.
The midwife hugged me as she walked me to surgery. Due to the late hour of the surgery I was kept over for observation. The Doctor returned that evening to explain what a partial molar pregnancy was. I had never heard of it. I didn’t even know what a HCG level was. He said that it couldn’t be confirmed until the sample was tested. Information helps allay fears. The info leaflets from Cork were very good.
Post surgery I remember being in an antenatal private room. An attendant came in and in a hushed voice said I am so sorry for your loss. She was just hanging a curtain. I wondered how did she know. On discharge I noticed a butterfly on my room door only. This was to inform staff that I had suffered a loss. A simple but lovely touch.
Due to complications I returned to hospital for 2 nights the following week at risk of infection. I was forced to go through A&E as that is their policy post miscarriage. This was very traumatic as I ended up in the same room where my brother in law died. I couldn’t believe this was happening. The Doctor didn’t know she was so sorry when we told her and moved us. I shouldn’t have had to wait 4 hours in A&E as the midwives were waiting upstairs. (This would be the only thing I would like to see change).
During my stay a counsellor came to see me several times. It helped to talk.
In the weeks and months to follow I travelled every Monday to get bloods done. I never had to sit in the waiting room with other excited potential parents. I just popped my head in the reception and my bloods were quickly done. They never had to ask my name they knew me every time. Always so kind and welcoming. Imagine how many people they see and yet they knew my name.
I would receive a call in the afternoon from the hospital and a text from Cork to let me know what my levels were at. Week by week they went down slowly. Finally in August I was at 0.
A miscarriage can be very lonely and isolating. People don’t talk about it. They stop asking how you are. But having to return to Mullingar every week and having the texts from Cork every week was a big comfort. Someone was checking in on me, travelling with me on this journey.
I am grateful to all who have supported me in this. When tragedy strikes look for the heroes they are always there…
I received a card which said: “Somewhere up in heaven there’s a little angel who has nothing else to do except sit around all day and watch over you.”
If you are reading this you are on your own journey. Be kind to yourself. Take one step at a time. You will get there.
Patient Story 6: Happy ending that we never imagined:
My husband and I went for our 12 week scan full of nervous excitement. It was our 1st pregnancy and had taken a bit of time to get to this stage. He was looking at the sonographers face and knew something was wrong immediately. Then she told us that she hadn’t good news, that she couldn’t find our baby’s heartbeat. Shocked, gutted, all those words were an understatement. We had to go upstairs to meet someone who spoke to us about pregnancy loss and miscarriage and our options on how to deal with it. We went home in a blur and went back the next day after deciding to opt for an ERPC. I had a further scan to confirm what we already knew and we were sent home with medication to take the following morning before the procedure. Those couple of days were full of emptiness and why’s and sadness. We were asked if we wanted to send the tissue off for testing and said we would. We had what was termed as a missed miscarriage. I had no symptoms that there was anything wrong at all. All the staff in the hospital couldn’t have been nicer or more sympathetic to us. They really all go beyond a job and were so kind to us which makes such an ordeal some tiny bit easier to come through.
6 weeks after the miscarriage, I was at work and got a phone call from a doctor from CUMH informing me that the results of the tests from the tissue had come back and we had what was known as a partial molar pregnancy. I hadn’t the slightest clue what this meant. She directed me to an NHS website dedicated to this but all I heard when she was trying to explain was the word chemotherapy and my brain shut down. Off I went back to my desk at work. I don’t know how I managed the next couple of hours. I was probably in shock as I had just been coming to terms with having had a miscarriage and then all this was extra information to process and overcome as well.
Following on, I had to return to CUMH to get my bloods checked to make sure the hcg hormone levels dropped down. I was really lucky in that the levels dropped so quickly. It only took two blood tests and my levels had dropped to below 5. I also had an appointment with Orlaith the clinical nurse specialist. She explained everything thoroughly to me and answered all my questions no matter how silly they seemed. The clinic and patients are truly blessed to have her. She really really helped me to overcome things. I never met Caitriona but have spoken on the phone to her and I honestly could not have met or spoken to two nicer or more genuinely caring people.
And for the happy ending that we never imagined, we were extremely lucky to have another pregnancy almost immediately after all the horrible and upsetting time we went through and welcomed our beautiful baby girl to the world the following May.
