I stopped writing after around 14 weeks gestation as I thought there wouldn’t be much more to say, oh how I was wrong! I should have known though that nothing is ever totally straight forward when it comes to me and pregnancy. So I’ll start from where I finished last time and I’m hoping by talking about my pregnancy after loss experience this time will help someone somewhere to firstly self advocate and not to be afraid to follow your instincts even if you may feel at times nervous to tell professionals your thoughts, just do it, you have nothing to lose!
After my 12 week nuchal screening I received a booklet in the post one Saturday afternoon diagnosing me with Low Papp-A which is a hormone that is secreted by the placenta that indicates the placenta function/health. Being diagnosed with low Papp-a means that potentially your placenta is not functioning at full health. A fantastic doctor I know described the placenta as an engine that takes over from 12/14 weeks and you need your engine to be fully functioning to carry you to the end of the pregnancy, if you have a placenta that is not 100% at 12 weeks there is potential that it will begin to worsen as time goes on and therefore not get you to where you need to be.
Low Papp-a can cause the baby not to get the full nutrients needs from the placenta resulting in a smaller baby or growth issues, it can also result in cord flow issues from mum to baby. It is not a guarantee that any of this will become a problem if you are diagnosed it is just a risk factor that you are made aware of and so you are offered 2 extra growth scans later in pregnancy to check the placenta function and babies growth.
I found receiving the leaflet in the post that listed some of the terrifying things Papp-a can result in awful as the only option on a Saturday afternoon was to hit google as I couldn’t speak to anyone.
I think this could be done in a far less stressful way either via a phone call from a screening midwife or at least not a letter on a weekend. Below is an image of what I received and I’m sure you can imagine I was just upset that after getting this far we were now at even higher risk of a not so smooth pregnancy. The booklet had an appointment with it to see a consultant at 28 weeks to discuss this further… this was 14 weeks away! Luckily as I was already high risk I had an appointment booked for 22 weeks with my recurrent miscarriage consultant so I would see someone 6 weeks sooner than that.
I already had concerns about my placenta from my previous experience with Ted. We know that with Ted I started to bleed fairly heavily from 31 weeks and that I had a small placental abruption, eventually this slowed Teds growth and between 33-35 weeks we had little to no growth and so it was safer for him to be delivered. Unfortunately my placenta never got sent away for testing in the end due to the emergency c section in Barnsley and him been rushed off to nicu I forgot to ask them to do a full examination of my placenta and to send it away to be tested… I so wish now I had remembered. I always wondered if the treatment I had undergone with Ted had contributed to the placenta and growth issues later in the pregnancy and that is still something I’ve never gotten to the bottom of despite lots of research and time trying to look into it.
At 22 weeks I went to my consultant app and when asked if I had any questions or concerns I addressed my fears that the end of the pregnancy would result in bleeding and placenta failure like with Ted and now that I had the low Papp-a diagnosis it felt like this would be even more of a possibility. My consultant told me not to worry about any of that, that every pregnancy is different, everything would be fine and that he would hope to deliver me at due date with no concerns. I left feeling that I maybe had been worrying over nothing and that this time would be better and I should relax more. So over the coming weeks I booked several trips/breaks (in the uk) with family and friends and threw caution to the wind, I was just a normal pregnant person and I needed to stop been concerned that this pregnancy would go wrong. Finally this week the horrendous sickness started to tail off which meant I could leave the house more, I just need the restrictions on restaurants to ease and I was ready to go all you can eat big time!
The following week at 23 weeks I still wasn’t feeling any fetal movement which I thought was strange with it been my second baby, I was feeling lots of movement with Ted by 21 weeks and they say you feel your second baby sooner. I did know from the anatomy scan that my placenta is at the front this time and that this could affect how much I would feel, however I decided to book a private scan with the consultant sonographer at our local hospital. We are very lucky in Hull that this service is offered because if you feel you need reassurance going for a scan with a consultant is a much better idea then going to one of the other local scan places which are more focussed on getting pretty images of your baby. As much as it is reassuring to go and check your babies heart is still beating when the fear gets the better of you, please please remember that these places are non diagnostic, I have known so many women have terrible experiences having the fear of their life put into them by these scan places to then be referred to the hospital to be scanned by a medical professional to find out the panic was unnecessary.
If you suffer with rpl and are under recurrent miscarriage the normal practice pre pandemic is that you can have a reassurance scan between 6/7 weeks and a second one at 8/9 weeks. Due to Covid restrictions the national NICE guidelines were amended to say that hospitals are not required to offer reassurance scans during the pandemic and would only do diagnostic scans if you have pain/bleeding or something is wrong. Once again we were very lucky in Hull that our head rpl consultant decided that the trust would still offer the one 6/7 week reassurance scan. I think this speaks volumes of how far the understanding and support for rpl here has come and I truly believe our epau and the staff have great awareness and give very good support and I think the work of the charity has helped with that over the last 4 years.
All of the above said my point is that even when we are not in a pandemic often a scan every 3 weeks is not enough when you have suffered multiple losses. A scan gives you some reassurance for maybe 24 hours and then you are back in the fear that the heart has stopped beating and it’s all over. I find a lot of women that I support often say that their husband/partner thinks they are crazy for wanting more scans or that it’s not necessary, I completely believe that in the majority of cases are husbands do not think about the pregnancy every day never mind every minute of every hour like we do, I don’t think they grow the same level of concern or protection over the tiny baby we are growing and I don’t think they will ever understand what we go through even if you have one of the supportive ones that does show interest.
Personally if it will make you feel better and you can afford it then just do it if it helps keep you borderline sane! At the 23 week (private) scan with the consultant I explained my reason for coming was lack of movement yet. After a thorough and detailed scan (she’s a perfectionist) she said baby was slightly on the small side (9th percentile) but everything still looking perfect and in proportion, all organs checked and looking good. That’s all I needed to know and it left me feeling reassured and confident baby is doing fine. During this week I also started to feel quite unwell after eating and I just knew in my heart that I had the onset of gestational diabetes again from the way I was feeling. I was tested at 8 weeks and given the all clear so they would then retest at 28 weeks but I knew it had started so I held my hands up and contacted the diabetic team. Sure enough it was confirmed a few days later the diabetes had returned and the low carb, low sugar diet was to commence.
So I now become pretty high risk having both low Papp-a and gestational diabetes along side my obstetric history and Ted been delivered pre term due to placenta deterioration. Low Papp-a in our local trust means you get two scans later in pregnancy but the diabetes is 5 extra scans 3 weeks apart from 28 weeks. At 24.5 weeks I knew I was only 3.5 weeks away from my next nhs growth scan but I still was concerned that I barely ever felt baby move and there was certainly no signs of any pattern developing. Therefore I decided to book a 25 week scan with the consultant again just for my own sanity and to help bridge the gap and wait for the free one coming up.
I went in at 25+2 exactly 2 weeks after the previous scan and again explained the lack of movement and how I felt I had stopped growing but that could be the diet kicking in as I had already started to lose weight from restricting carbs and cutting sugar completely. The doctor finished the scan and sat on the edge of the bed and said not to panic but baby was now very small and had dropped to the 3rd centile from the 9th two weeks previous. This now automatically triggers an sga diagnosis (small for gestational age) and you need to be reviewed by an obstetric consultant and a plan is put in place that means weekly doppler scans to check the cord function and blood flow between me and the babies heart and brain and then growth monitoring every two weeks. As always I felt very well informed by her and also in safe hands, I asked that I can be under her care and she said she would go arrange that where possible all of my scans would be in her clinic.
Continuity of care unfortunately is not something that happens very often in pregnancy, I know there have been some pilot projects of creating midwifery teams that provide continuity of care but hospital care is completely different and you can see a different person every time you attend any appointment and it’s not great, it doesn’t help that I’ve learnt over the years medicine can be very subjective at times and doctors and specialists can really differ in their opinion.
I was due in the consultant clinic with my obstetric consultant that afternoon luckily so I was pleased I would be seeing him instead of a random registrar after the scan. That afternoon I took the scan report to the app with me, I was interested to see what he thought, our last conversation was at 22 weeks when I left and booked lots of stuff because he convinced me this pregnancy was different and not to worry. The outcome of the appointment was we would have the weekly scans and also I was now to attend twice a week sun/thurs to have a ctg heart monitoring of baby too, so this pregnancy just became a part time job in itself. He talked about taking it week by week now and to hopefully get to 28 weeks, at this point baby was estimated just 644grams so had already met the 500g requirement for the hospital to provide neonatal care it’s still a huge worry.
Now if your one of these people that’s sat there thinking well these growth scans aren’t even accurate etc.. let me explain that yes there is quite possibly a margin of error when different sonographers are scanning you on different machines here there and everywhere, a random growth scan could quite easily be not too accurate. However my baby is being measured every two weeks and the growth compared by the same consultant on the same machine and so the accuracy will be very good. So for all the people that think they are irrelevant that’s really not true as they can pick up that your baby is struggling or not developing/growing well and this is important to know especially if you have a history like mine. It’s not the estimated weight that is particularly important it’s the amount of growth between the scans that is crucial.
I should also say that at our 20 week anatomy scan baby was measuring exactly on track and so we know that baby wasn’t always sga and that her growth had slowed. Ted stopped growing at 33 weeks due to my placenta failing and was born sga pre term, if he hadn’t been delivered when he was we can only dread to think what the outcome may have been. If baby is not growing well, it’s important that the blood flow between mum and baby are monitored very closely because if this was to change it could put you at risk of still birth.
This time around by 26 weeks I was really struggling to manage my diabetes even though I have completely stuck to the diet and not strayed at all my issue has been my fasting readings in a morning which are caused by your hormones when you sleep and nothing I do could make them better. I managed to stay diet controlled the whole time with Ted but it became apparent quite quickly that it was worse this time and at 26 weeks it was suggested I needed to start metformin. I have supports lots of pcos women that are on metformin and so was already very aware of how awful it can be, so I straight away asked the midwives for the slow release version as it’s meant to be more gentle.
I always called the steroids the devil drug as I found them so awful I never thought I would find something as bad as them, well hello metformin you well and truly knock the steroids off the worst drug title as the side effects were barbaric. I won’t go into too much detail incase anyone is eating their dinner but let’s just say I could not leave the bathroom let alone the house and I think my husband was considering wearing his face mask around our home for a few weeks! The stomach pain that kept me awake at night was awful too, I also started to be sick again which was frustrating after 21 weeks of vomiting earlier in the pregnancy.
After around a week I started to tolerate the metformin better and it kept my numbers in range for around 3 weeks but they soon became uncontrollable again despite my hardcore diet which I didn’t stray from. So many people said to me oh just have a treat or it will be fine to have a take away, but if they actually did some reading up on the dangerous possibilities that gestational diabetes can lead to I think they would not consider the risks, I don’t want to give her diabetes for life and be the one to blame because I couldn’t skip chocolate for a few months! I had the metformin doubled to the highest dosage at 29 weeks, it hit me bad all over again but I know it’s not forever.
I was now having weekly doppler scans with my favourite doctor to check blood flow to little ones main organs and then every other week growth scans. The aim was for baby to keep following her own growth line which we already know is slow and steady and below average, but as long as she’s growing she’s better off in and out. The gestational age at birth is what matters most when it comes to how much neonatal help your baby may need… so a baby born at 34 weeks at 5lb and a baby born at 36 weeks at 5lb, the 34 weeker is more likely to need nicu care because even though the size of the baby is the same the 36 weeker has two more weeks organ development, as long as blood flow through the cord is good the babies organs will continue to mature even if the growth is very slow.
I think a lot of people tend to not understand the percentiles too when talking about growth or lack of so I’ll try my best to explain how I understand it. If you take 100 babies born and your baby is on the 50th centile for fetal weight, then this means that 50 babies were bigger than your baby and 50 were smaller than your baby, making your baby exactly perfectly average in the middle of the scale. If your baby is born on the 90th centile then it is much larger than the average baby as 90 babies were on average smaller than your baby, usually when you are in these larger percentile there may be some other reson for example uncontrolled diabetes. A baby on the 20th percentile is generally smaller than your average baby with 80 of the babies been born been bigger than yours but you may just have little babies!
Another thing to bear in mind is that your personalised growth chart with the percentiles on is tailored to you and based on your height, weight, bmi & any previous baby birth weights. So if you and your partner are both 6ft tall your chart is going to reflect that you may be expected to have a slightly larger baby then if you are generally extremely petite and 4ft tall. All of this said going back to my baby, she has been consistent under the 10th centile fluctuating between 3rd & 9th centile from 23 weeks gestation onwards and this is why she is so highly monitored as this is most likely linked to my not so great placenta function caused by low Papp-a or the diabetes.
So we (me & 2 consultants) have been going on a week by week basis for the last 9 weeks just watching how baby is doing and that she’s following her line, it’s quite crazy knowing any week I could go and be told ok she’s going to do better on the outside so now is the time, I’ve had my bags packed since 28 weeks but not felt at all ready to meet this little girl just yet!
At 35 weeks with Ted there was no choice to leave him inside any longer as I had been bleeding for 4 weeks, my placenta was beginning to come away and his growth had slowed to the 10th centile. Teds growth the whole pregnancy until 33 weeks was pretty average around the 50th percentile but by the 34+6 he had dropped to the 10th which was the reason he was taken at that point. To put that into perspective this little one has not been over the 10th centile at any point and is a tiny little dot!
My reason for writing this whole blog entry is two things really, firstly to reiterate that pregnancy after loss isn’t necessarily straight forward and all totally fine once you get past your danger zone, it can be a worry for the whole pregnancy and you can still think you are going to have it all taken away from you at any moment.
The second is ALWAYS follow your intuition I just knew that I was not feeling my baby move yet by 25 weeks and that surely was not normal been my 2nd baby, I followed that up myself and advocated like I always have done, to then be able to find out sooner rather than later how small this little girly was and for her to be very closely monitored.
So here we are at 36 weeks she’s made it past where Ted did and for once I feel quite proud of my body that normally always fails me that it’s keeping her going day by day, I hope my daughter will be a strong & fierce woman that will always feel supported by me to fight for what she wants in life and she will succeed.
Keep on believing and keep on chasing rainbows but most importantly stand up for what you believe and don’t take no for an answer ❤️🌈