Our journey to baby # 2 (Part One)
Scott and I have recently been deliberating over whether we would once again share our journey to pregnancy (and beyond) through my blog. I knew I would be writing it all down like last time as a way of coping with my emotions and processing what we are going through (and to save Scott from my emotional outbursts every 5 minutes), but I was unsure if I would share it immediately considering the likelihood that something might go wrong. But last week I received a message from a Mum who has been following our journey since I shared my first ever blog about infertility. She said my posts were inspirational during their struggle to conceive, and she has coincidentally just found me again through Miracle Mumma after having her twins prematurely. Suddenly, all of our reservations disappeared - this was the confirmation we needed to share every step of our journey forward with you all…be prepared for a ‘hot mess’ overshare of everything from timed intercourse to vaginal mucous. As I always say…if our story reaches just one person who is going through something similar and is up at night googling for hope, it is all worth it.
If you have followed my blogs since ‘Purls of Passion’, you will know we suffered unexplained infertility, fertility treatment and a miscarriage before finally conceiving James (naturally, can you believe it!) after about 2 years of trying. Infertility changed me. I had no control over the final outcome, yet it controlled every aspect of my life. I was jealous, bitter and I became unrecognisable…a scared, broken version of my former self. I withdrew from the people who loved me most, and I felt anger towards people that I had never met. But then we finally got help and we got that positive, only to lose our baby at 6 weeks’ gestation. This is when I became numb. I was sad and lonely, and I felt nothing else. Our rainbow baby (James) was my saving grace - he was the only thing strong enough to pull me out of my grief and give me hope. We had been through enough heartache for a lifetime and were looking forward to an easier journey ahead (and everyone else was looking forward to me being less of a bitch!)
My scans discovered that I have a bicornuate (heart-shaped) uterus, but we were reassured they are generally associated with good outcomes in pregnancy. I absolutely loved being pregnant, but it was tough. I had a large bleed at 10 weeks, and at our 20-week scan there were concerns for our boys’ health. They weren’t able to get all of the measurements required to ‘tick him off’, and we were told his head was narrow and his movement was restricted due to the shape of my uterus. And on top of all that, the official report from that scan came back showing an abnormality near our boy’s head, likely to be an amniotic band (a fibrous band that can cause entrapment of foetal parts and restriction of blood flow) – yep, near his head. I still remember the sinking feeling that overwhelmed me at that moment. After days of endless tears and expecting the worst, we were finally told that the radiographer had mistaken my uterus septum for an amniotic band…just, wow! I felt like we were never able to truly celebrate this exciting time without having a ‘what if’ hanging over our heads. I was almost 30 weeks pregnant at my baby shower, and for the first time in a long time, I finally felt a sense of calm. But just 4 days later, I was being rushed to emergency theatre with words such as ‘code zero’, ‘foetal distress’ and ‘low heart rate’ being thrown around. And then came NICU life…leaving the hospital without the precious bundle I had waited over 2 years to hold. He was born black and blue with a rare life-threatening platelet disorder and we were told on day one that he was lucky to be alive.
As most of you know, James is now a happy and healthy 14-month old! We aren’t exactly ‘ready’ to try for number 2 (which was confirmed by a recent pregnancy scare that had us both breathing our first ever sign of relief at a negative test), but the reality of our situation is that we need to at least be prepared...which also happens to be my middle name. So, last week we had an appointment with a reputable obstetrician (let’s call her Dr S) to come up with a plan. As we were driving to the city I remember thinking ‘where the hell am I going to start?’ when she asks for our story. I’m all kinds of effed up. But as I walked into her office, I felt at ease. After only a couple of minutes of Q&A, she had the details she needed and was already coming up with a plan – she’s a keeper!
Firstly, Dr S reinforced my suspicions about whether my uterus really is ‘bicornuate’ considering James arrived 10 weeks early. It just didn’t add up that during my pregnancy we were constantly told that James was in the right side of my uterus but his feet were pushing through to the left. In the past, no one has been able to truly define my uterus abnormality despite various scans. Dr S questioned whether I actually have a septate uterus instead of bicornuate. This is difficult to describe, but with a bicornuate uterus the actual wall of the uterus dips down to create two separate ‘horns’, whereas with a septate uterus the wall is intact and there is a piece of tissue dividing the uterus into two halves. A bicornuate uterus cannot be corrected, but a septate uterus can sometimes be resected. Dr S suggested we perform a laparoscopy and hysteroscopy - put a camera up in there and have a good look. Hallelujah! Finally, someone wants to properly investigate and diagnose our ‘special’ situation! There was no question for us – we wanted to go into our next pregnancy equipped with as much knowledge as possible to give our baby the best chance. It might seem crazy to some, but minor gynaecological surgery is undeniably worth it if we can move forward with some piece of mind (and avoid experiencing a premature birth). So the plan is to perform a laparoscopy initially, and then a hysteroscopy at the same time if required to make a proper diagnosis. If Dr S discovers that I have a septate uterus, she may also perform a resection to remove some of the extra tissue. It would take roughly a week to recover from the surgery and we would then need to wait 3 months before falling pregnant.
I would like to finish there knowing that was all we had to consider, but this was just the beginning. We then discussed how we would fall pregnant when we decided we were ready. It is quite strange to admit that despite the long, exhausting and heart-breaking journey to conceiving James, this actually seems like the easy part this time around! All the investigations had been done and we already knew that my train wreck of a body doesn’t like to ovulate on its own, so we would immediately undergo ovulation induction using clomid. Dr S is confident that with a little help to mature and release my follicles (and some sexy, not at all stressful, timed intercourse) we would fall pregnant in just a few short months. Thankyou Scott and your Super Sperm.
As soon as we find out we’re pregnant, we will need to be in touch with a haematologist to arrange treatment for the rare platelet condition (neonatal allo-immune thrombocytopaenia or NAIT) James was born with. The chances of this occurring in our next pregnancy are 50/50, but we will be treated nonetheless due to the severity of its complications. I won’t go into this in too much detail (which is almost impossible), but NAIT is similar to rhesus disease, except much rarer and it affects platelets. Oh and the outrageous part – it is not routinely screened for. My platelet composition is extremely rare (of course). During my pregnancy, the platelet antigens which James inherited from Scott were recognised by my body as foreign, and I made reactive antibodies which crossed the placenta and subsequently ‘attacked’ his platelets –When platelet levels fall below 50K it is classified as severe. At just 30 weeks gestation, James was born with a platelet count of 13K - levels this low generally cause irreversible intracranial haemorrhage (bleeding on the brain), resulting in long-term disability or death. If he were to stay inside any longer, he most probably would not have survived. While it is extremely comforting to be aware of this condition this time around, the treatment is quite unpleasant. I will receive weekly intravenous infusions of immunoglobulin, which significantly increases the platelet count of the foetus (somehow prevents or reduces the ‘attacking’ process). Generally, this treatment is started at 20 weeks pregnant if the previous child didn’t have any complications, but considering James’ count was so low at just 30 weeks, it was decided I will need to start these transfusions by 12 weeks. The side effects of this drug are quite nasty, with severe headaches and nausea at the top of the list. On top of this, these infusions cost $8,000 each, I’ll let you do the maths! 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.
Lastly, we discussed the management of my pregnancy in terms of pre-term birth. Dr S started scribbling a list of things (her management plan) on a piece of paper and I swear I fell in love with her in that exact moment. She is organised and she gives a shit and it warms my OCD heart (although her handwriting needs a little work!) On her list were regular progesterone pessaries, 4-6 weekly ultrasounds including cervical length measurements (with the high possibility of a cervical stitch), and monthly swabs and urine specimens. She also suggested that I only work up until 20 weeks pregnant and move closer to Adelaide ‘just in case’. I love that she is cautious, but this last one is just a bit too over the top, even for me. We only live 30-40 minutes away, but from her parting comment of ‘thanks for coming all this way to see me’, I’m pretty sure she thinks our home town is closer to Melbourne than Adelaide! Bless her yuppie socks.
So now you are up to date and know just as much as me about my re-productive system and our plans for baby #2. If you are new to following my blogs, you will have only just realised that I’m hilarious! But in all seriousness…my blogs going forward are going to be raw, honest, and exposed. Please remember that this is our story, it is real life, and we are living this right now. I know this is entirely our decision to share a ‘live’ narrative of our delicate personal life with you all (which also means you will probably all know I’m pregnant as soon as we do), but it will also be our decision to stop at any time if we need to. So if I don’t post an update for a few weeks, please be gentle when asking questions. I look forward to over-sharing with you and giving you an inside into who we are behind the scenes of Miracle Mumma…an imperfect but oh so loved up family of three hoping to one day become four. I hope it reaches those who need it and makes them feel less alone.