The 'High-Risk' Road to Come...Infusions, Scans & Another Pre-Term Delivery

Since announcing our baby news, I have had a lot of people wish us a healthy and long pregnancy and say, ‘at least the hardest part is over’. And while that is partly true, unfortunately our pregnancy will be high risk and filled with its own struggles. Most people assume this means we will be monitored closely for signs of premature birth with more frequent scans and cervical length checks...yes, my vagina should just set up its own display! However, given the surgical removal of my uterine septum which aimed to give our baby more room to grow, I am crossing everything (mostly my legs when they’re not spread for scans) that this has reduced our risk! The biggest concern is something completely unrelated to this which I will explain now, but will cause our baby to be born premature regardless…

When James was born at 30 weeks gestation, his platelet count was severely low at 13K. Platelets are a component of the blood essential for clotting, and normal levels are between 140K and 450K. Low platelet levels cause bleeding into tissues and subsequent bruising, with severe cases causing uncontrollable haemorrhage. James was born extremely swollen and bruised, mostly around his head and bottom (both of which were ‘stuck’ in my small uterus – his head was up the top and his bum was down in my cervix). He had petechial (red/purple) spots which are caused by broken capillary blood vessels, and suffered a small grade 1 intracranial haemorrhage (brain bleed), but fortunately there was no long-term damage. Long story short, when James didn’t respond to standard platelet transfusion, the doctors investigated and quickly diagnosed James with ‘Neonatal AlloImmune Thrombocytopenia’ (NAIT). Basically, James inherited a platelet antigen from Scott which my body lacked and was recognised by my body as foreign. My body then developed reactive antibodies which crossed the placenta and subsequently ‘attacked’ James’ platelets. Do not get this confused with RhD alloimmunisation (rhesus) - this is completely different and relates to platelets rather than red blood cells. NAIT is a relatively uncommon condition which is not routinely tested or screened in pregnancy (and of course I happen to be that extremely rare problem-causing statistic!) Back on that first day in NICU, the neonatologist explained to us that James’ early arrival into this world was a blessing in disguise and if he had stayed inside just a little longer his platelets may have depleted completely and caused irreversible (if not fatal) internal bleeding – even now this news is inconceivable. We were also told that he may not have survived a vaginal delivery.

A few months after James was born I met with an amazing knowledgeable Maternal Fetal Medicine Doctor (Dr W) at the Women’s and Children’s Hospital who explained that according to our platelet typing, every pregnancy for us had a 50% chance of NAIT. In the absence of intervention, thrombocytopenia in the second affected child is always as or more severe than in the previous infant. This meant that no matter what, our next pregnancy would be treated for this condition. However, treatment is quite intense (and expensive). Dr W explained that I would receive weekly intravenous infusions of immunoglobulin (IVIG) +/- steroids, which largely reduces the risk of hemorrhage to just 2.7%. In my case, IVIG treatment will begin at around 16 weeks and each infusion takes approximately 6-8 hours. The side effects of this drug are quite nasty, with severe headaches, nausea and fever/chills at the top of the list. Also, these infusions cost the hospital around $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 couldn’t afford to have another baby. I left this appointment 2 years ago feeling extremely overwhelmed but knowing how lucky we are to have these treatments available and access to specialists who perform miracles every single day.

Fast forward to now! On Thursday I had an appointment with Dr Yoong (our amazing O&G who had already contacted Dr W with our news) to discuss the plan of action from here. The first thing we did was take a sneak peak at our little bean, who was measuring a perfect 9w 5d and I heard the heartbeat for the first time at 182 beats per minute! Dr Yoong looked at me and said ‘you still look so anxious’ to which I replied ‘this is just going to be my face for the next 6 months!’ Afterwards, we got to the serious stuff. My due date is 12th June 2019, but I will be delivering via planned C-Section at 34 weeks gestation in early May at the Women’s & Children’s Hospital. Dr W explained that an early delivery (and C-section) is important in the off chance that treatment doesn’t work and our baby has a low platelet count, and will ensure we have the rare specific antigen-free platelets on hand at delivery in case they are required. We have chosen to do shared care between Dr Yoong and Dr W because they are both superstars, but delivery at a public hospital ensures there is a NICU available. I have booked an appointment with Dr W on 3rd December to put this all in motion, and otherwise will be seeing Dr Yoong again at 12 weeks after nuchal scans and blood tests. One thing is for sure, I feel EXTREMELY well cared for and have two of the very best doctors in Adelaide looking after us, not to mention the best radiographers at Adelaide Women’s Imaging! It’s not everyday your O&G personally messages you on a Friday night giving you test results and reassurance, right!?

In other news, James keeps ‘patting’ and kissing the ‘baby in Mummy’s belly’ (I’m pretty sure he thinks my belly button is a baby). I finally feel like I can eat a vegetable again and I even had a coffee today! I can’t recall the last time I did a poo but I no longer have to defend my ‘bee-sting’ boobs! And come early January I'll be seeking volunteers to waste their days away in a sterile & boring hospital to keep me company each week...anyone!? Yes I’m anxious and the lump in my throat seems to be here to stay, but you seriously can’t wipe the smile off my face! At the end of the day, James is our living proof that anything is possible when you have a village, even if the odds are largely stacked against you.

 

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