Pregnancy following pre-term birth: so what happens next time?
The dust has settled. James is winning at life and I’m slowly winning at Mum-ing. But this has raised a new question – what happens next pregnancy? Well I’m glad you asked…because I recently was given the answers!
When James was born, the ever-famous Dr Rad was doing his ever-amazing job by asking me about my plans regarding our next pregnancy. At the time, I snorted at him…literally – it got the same response as when I was asked about birth control while James was still in hospital! I mean c’mon mate, the only thing stimulating my nipples right now is an expressing kit! Anyway…I digress. So Dr Rad was keen to know sooner rather than later if James was going to be a big brother, and for good reason (which I can appreciate now). I eventually answered with apprehension that we had initially planned to have another baby down the track, but at this stage we simply felt blessed to have our one healthy miracle staring back at us from inside his humidicrib. I couldn’t even think about the possibility of another baby after the emotional turmoil we had endured. It had taken absolutely everything to finally get our little guy and he had changed my perspective on absolutely everything! I went from wanting and needing three babies, to being utterly content with just him. That previous greed seemed absolutely ridiculous. Of course, all Dr Rad took from that was ‘we had initially planned to have another baby down the track’ (bless his cotton, checkered socks!) – he referred me to a reputable maternal fetal medicine doctor for pre-pregnancy planning ‘just in case’.
I didn’t think of it again until I received my appointment in the mail just weeks after James had come home from hospital. Again, I snorted! WAY too early thankyou. Let’s just focus on not breaking this baby for now! I rang and pushed the appointment out a couple of months, still wondering how on earth I could think about having another child – honestly, how do you Mum’s have multiple children, I mean seriously? I struggled to even wash my fanny in those first few weeks with a newborn! Again…I digress. The next appointment came up quicker than I had hoped, but I found myself intrigued and decided it was time to at least consider our future – and by this stage I was managing a shower a day and had even put a bra on…if I give it another 5 years I might be able to consider sexual intercourse, right?! At the very least, I needed to know what it would involve if we did decide on round 2 – I owed myself (and Scott) that much. So off I went once again, this time with James in tow, to the Women’s and Children’s Hospital. I met with the doctor who I will call Dr Awesome and we discussed the two big concerns with my next pregnancy:
Obviously this was our biggest worry – it caused us so much anxiety throughout our first pregnancy and is ultimately the reason James came early. I had so many unanswered questions. Would I always have premature babies? Could they remove the septum in my uterus? And if they did, would it increase my fertility? Dr Awesome started by assuring me I wasn’t alone with this condition. In fact, 1 in 20 women have some form of a ‘heart-shaped’ uterus. However, the length of my septum was far less common, and the varying degrees of this abnormality are not factored into the above statistic. My first question was if there was anything they could do to ‘fix’ it. The answer was yes, but the fact that I had carried a baby to ‘viable’ and he had no complications arising from my abnormal uterus meant that they would not take action at this point in time. If I had a history of late miscarriages or pre-term labour prior to 24 weeks gestation, they would consider action without hesitation. But Dr Awesome explained that the risks associated with surgical removal of the septum are high and could cause complications for future pregnancies. I know what you’re thinking…surely the ‘risks’ of premature birth are enough to act; I mean who’s to say we will be as lucky to have a healthy baby next time? But I can understand both perspectives. It served us well the first time…don’t fix what aint broke, right? But I also don’t like the thought of waiting for something to break before fixing it. Actually it scares the shit out of me.
So yes, I will continue to have premature babies. Lucky I don’t know any different, hey! The bonus is that the chances of me getting past 30 weeks gestation are better in future pregnancies – James had ‘stretched’ my uterus and they were hopeful that I could carry my next baby longer. The tricky part…I carried James in the right side of my uterus meaning only that side was stretched. Furthermore, I had previously miscarried in the left side of my uterus and was told that side was already smaller and less viable. And if the egg happens to implant on the septum itself, well the chances are pretty much zero due to lack of blood supply. So next time around, they suggest I aim to get pregnant on the ride side. Sure thing! It only took us 2 years, a miscarriage and fertility treatment to finally conceive James so this should be a walk in the park, right?! But in all honesty…how does this work? Well first things first, we will need to be monitored. This means no chance of a stress-free natural conception second time around either. ‘Normal’ people typically ovulate on alternate sides each month e.g. one month they will ovulate on the right, the next on the left. I’m not clever enough to ovulate at all! I would need to return to a fertility specialist, undergo ovulation induction, and attempt to get pregnant every second month on the right side. Yep, sounds like so much fun…so intimate and spontaneous! Just how baby-making should be! I know I sound bitter, but I’m not. I am so blessed to even have the option…it just sucks.
Neonatal Allo-Immune Thrombocytopaenia (NAIT)
The second concern that we discussed is the platelet condition James was born with. I had actually failed to remember that this needed to be addressed (or maybe I just didn’t consider it as important) but Dr Awesome placed more emphasis on this than my uterus. When James was born with dangerously low platelets (small blood cells responsible for stopping bleeding in the human body), I was told we would need to have a firm plan of action in place prior to getting pregnant again. We knew James was extremely lucky not to have had any long-term complications from this condition as we were constantly told he was lucky to be alive, but it wasn’t until this appointment that the true magnitude of it hit home. NAIT is rare…it occurs in between 1 in 2000 and 1 in 5000 births (unfortunately it is not well researched). When platelet levels fall below 50K it is classified as severe. James’ level was 13K. Dr Awesome was gobsmacked – levels this low generally cause irreversible intracranial haemorrhage (bleeding on the brain), resulting in long-term disability or death. James did suffer major bruising and a small grade 1 intracranial haemorrhage, but fortunately there was no long-term damage. This is where it truly started to sink in just how lucky we were – even the most knowledgeable doctors who really have ‘seen it all’ were calling this a miracle!
Dr Awesome went on to explain NAIT in detail and I slowly began to have a better understanding of the condition. In short, when James was formed, he inherited a type of platelet antigen from both myself and Scott. The antigen he inherited from Scott (which was different to mine) was recognised by my body as ‘foreign’, and my immune system created antibodies to destroy them. These antibodies in my blood crossed the placenta, came into contact with James’ platelets and caused them to slowly decrease. This process generally starts from 10 weeks’ gestation and can eventually deplete the baby’s platelets completely. It finally sunk in just how accurate the doctors were when they said James saved his own life by coming early, and it’s terrifying. His platelets were severely depleted at just 30 weeks gestation, imagine (actually let’s not…)
Dr Awesome answered all of my questions thoroughly without me even having to ask. I left feeling all cocky thinking I finally understood the features of this unique condition. Then I got home, and Scott asked me why it’s so rare if it’s as simple as inheriting genes from parents – you would think it would happen frequently (as it does with red blood cells). And then I realised that I still had absolutely no clue what I was talking about! So I began to research like the nerd that I am and recruited the help of my friend who is both nerdy and beautiful (bitch!) and we began to answer some of the questions that had popped up. I’m not going to bore you with the complex details, but if you are interested this article describes it in short simple terms that even my exhausted Mum brain can understand! Basically, I inherited the least common platelet antigen from both of my parents and am therefore classified as ‘negative’ – this is prevalent in just 1-2% of the population. Of those, only 10% will develop the antibodies to attack the baby’s platelets (in the majority of cases, differences in platelet antigens between mother and baby don’t cause any issues). And of course I happen to be that extremely rare problem-causing statistic!
So does this mean it will happen next pregnancy? This is where it gets complicated and I suggest you read the above article if you want the nitty-gritty. They say the recurrence rate is very high (88-97%) with progressively more severe manifestations in subsequent pregnancies, but ultimately, it all depends on the platelet antigens that Scott inherited from his parents. It’s pretty much a roll of the dice when the sperm meets the egg. Little embryo James obviously drew the short straw. As we already know, there is no routine screening for this condition due to its rarity. But thankfully, for those such as us who have a previously affected child there is strict testing and monitoring in subsequent pregnancies. Dr Awesome explained that in order to test our future baby’s platelet type, an amniotic fluid test can be performed (a needle through my abdomen to withdraw a fluid sample from the amniotic sac), but the risk of bleeding and miscarriage is high along with the possibility of putting the baby’s platelets in direct contact with mine. Instead, he suggests we assume the worst and treat the possible condition regardless.
However, treatment is pretty intense (and expensive). Firstly, I would need to notify the maternal foetal medicine unit at the Women’s & Children’s as soon as I found out I was pregnant. This means I’d pretty much go straight from Repromed to the hospital – I feel like such an experiment! I would receive weekly intravenous infusions of immunoglobulin for 20 weeks of the pregnancy, which significantly increases the platelet count of the foetus (somehow prevents or reduces the ‘attacking’ process) and therefore decreases the risk of internal bleeding. The side effects of this drug are quite nasty, with severe headaches and nausea at the top of the list. Also, these infusions cost the hospital $8,000 a pop, meaning a total cost of $160K just for the infusions throughout my pregnancy. All I can say is thank god we live in Australia, if we were anywhere else we quite literally wouldn’t be able to have another baby. At the end of the pregnancy (or however far I make it) I would need to have a c-section to prevent any bruising or bleeding to the baby. There is the possibility that prior to delivering (if there is time) I could donate my platelets which are negative for the antigen that has caused the problem, and they can be used to treat our baby once it is born. Obviously the birth will be closely monitored and bubs will require urgent blood tests and medical treatment initially.
Well that’s a wrap
As you can see from the above, Scott and I are unbelievably lucky that we didn’t have any long-term complications in our first pregnancy with James. To sit here now and understand the risks associated with both a bicornuate uterus and NAIT, I almost feel like we have achieved the impossible! What’s even more incredible is as a result of this struggle, we now have the knowledge, awareness and a thorough plan to reduce the possibility of complications if we do decide to have another baby. While this is completely overwhelming and it is never going to be easy for us, we know how lucky we are to even have this option. I am terrified simply by the thought of getting pregnant and going through all of this again. To be honest, even considering it feels like I’m pushing my luck. But at the end of the day, James has changed us dramatically and has really put things into perspective – watching your child fight for survival gives you a new appreciation for life and the value of it. We have been blessed with a strong, determined, resilient and courageous fighter who showed us that anything is possible even when the odds are largely stacked against you.
^This is James just minutes old. It is hard to see in this picture, but James was born extremely swollen and bruised (his skin is tinged purple) – it is particularly prevalent on his bottom in this picture (which was stuck down in my cervix).