Hugely overdue update

I realise it has been MONTHS since I’ve posted, and for the first time in my (admittedly rather short!) blogging history, I actually feel a little guilty and it has been weighing on my mind.

On 28th November 2015, I delivered a gorgeous little boy by caesarean section. Weighing in at 4lb 120zs, he was tiny but perfectly formed.

A week prior to the delivery, growth scans had shown that he was starting to develop late onset intrauterine growth restriction (IUGR). This combined with increasing episodes of reduced foetal movements necessitated his early arrival at 38+5, with caesarean being the safest choice for him. As they consented me for the procedure, the risk “reduced future fertility” was mentioned (apparently, the scar tissue can theoretically make it harder for future embryos to implant). I remember thinking, “well I don’t want that”, but the priority was getting number 1 baby into the world safely, and if he ended up being “one and only”, well then so be it.

Delivering by elective caesarean is a strangely calm experience. Labour, living up to the word, is fraught and stressful for the overwhelming majority. I had a designated time slot for theatre that day, I had visits from various members of staff beforehand, I had my husband sat with me happily chatting to theatre staff, I had a colleague I’d known for a year operating on me, and I had Adele’s “Hello” playing on the radio (rather suitably) the moment my son was brought into the world – entirely pain-free. Bliss.

And so we entered the mad twilight world that comes with newly-found parenthood. We were in a windowless room on a ward with no real sense of day and night, and no mobile phone signal for contact with the outside world. As his birth weight was low, we were being encouraged to wake him every 3 hours at least, for nappy changes and feeds, and as he wasn’t latching well on the breast, I was doing my best to express whilst feeding and giving him formula top-ups. Every 24hrs was devoted to this little man, and the strangest thing was that he didn’t feel like mine! I don’t know what it was, whether it was having a caesarean rather than a natural delivery, and being behind a screen and being pregnant one moment and then having a baby just handed to you the next. Very, very odd considering I’d yearned for the moment for so long.

And  then Day  4 came.

This was the day they detected a heart murmur on a physical exam and arranged a scan of the heart, and then broke the news to us that he had a condition called Tetralogy of Fallot. This is a heart condition that comprises of four defects and requires open heart surgery before 6 months to fix, and then further surgery in later life.

I could not have been more shocked and devastated if somebody had hit me over the head with a sledgehammer. My husband nearly fainted. I held my 4 day old baby in my arms and sobbed. We grieved for weeks. It felt so bittersweet – having waited so long for our child to come along, we feared losing him. We shared the news with family and friends, trying to maintain a stiff upper lip, but fighting back the tears. All the  time whilst trying to look after a newborn which is challenging enough in its own right.

Since then, we have been seen by cardiologists in the Children’s Hospital. They do not think that we are dealing with Fallot’s (good news), but our boy does have a large ventricular septal defect (hole in the heart) along with a mild narrowing of the pulmonary valve. The hole definitely needs surgery in the first few months of life, as it starts to cause irreversible damage to the lungs if left for too long. The valve narrowing should not need any intervention other than perhaps a balloon stretch. And hopefully, following the one big open-heart surgery, he should be a normal little boy and lead a normal life.

The hole in the heart has started to cause symptoms of breathlessness (which we were advised would be the case). His little ribcage sucks in as he breathes, and he breathes fairly quickly, especially whilst he feeds. A fortnight ago, we were started on diuretics to remove fluid from the lungs and to therefore ease the work of breathing. This is used as a temporary measure before operative repair to buy time for the children to put on weight and thereby reduce the operative risk.

Two days after starting the diuretics, he became poorly. He was irritable and refusing to feed, and had such a weak wobbly cry. We spent a week in hospital being treated for kidney failure and dangerously high levels of potassium, caused by a drug overdose. It transpired that the prescription for the diuretics was TEN times that that it should have been, and my precious little boy was essentially poisoned.

Sometimes, I just have to be allowed to have a pity-party. There is only so much adversity a person can take.

But this is followed, later (and often after a sob to my better half) that we should also count our blessings. This time last year, after a failed cycle of IVF, I was convinced we would never be parents. Now, I am completely and utterly in love with something that is 50% me, which goes to show that you should never lose hope. There will be tough times ahead, and it will be hard to always be positive, but as my mother-in-law says, “he is the most perfect little boy – God just dropped a stitch when he made him. A bit of darning, and he’ll be as right as rain”.

The Beginning

Ok, so I’m on the road to thirty, not long married, and working in a madly busy, though very fulfilling career as a doctor. At a glance, I have it all – a degree, a beautiful home, a wonderful, successful husband and a menagerie of furry animals, but there is one  gaping hole in this Desperate Housewives-esque dream, and that is a baby.

One thing that academia does to you is to instil in you that, if you work hard enough at something, you can achieve anything. This is a mindset that is so difficult to shake off, having been ingrained in you since childhood. And it sets you up for misery later on in life, when things are beyond your control. I liken it a little to taking a driving test – it doesn’t matter how many books you read, or even how much you practice your reverse-around-a-corner, it’s all about your luck on the day. If that white van decides to cut you up when you’re so diligently driving along, that’s your lot. And your £70 or however much it costs to take a test these days. I failed my test. Twice. And it wasn’t books that helped me the third time.

Approximately 14 months ago, we decided the time was right for us to embark on the next rite of passage. As with most couples who find themselves in our predicament, you don’t imagine for one second that it will be difficult to conceive when you choose to do so. I mean, aren’t you told, “You’ve missed a pill?! Use condoms for 7 days”, “There’s a small risk you can still get pregnant on a period”, “Best thing to do is to use the Pill AND condoms”. It makes you think you only nearly to be looked at by a man to catch. You only nearly to do go down to the local shops (especially where we live) to run into a pregnant woman. So how hard can it be, right?! Is it not what our entire purpose is on earth?

Well, 14 months on, doing the textbook (here goes the books, again!) “no smoking, no drinking, healthy eating, exercise, healthy BMI, regular Folic Acid, man-Vitamins for the other half”, here I am.

What is the purpose of this blog? Well, over the last year or so, one of my biggest struggles has been the inability to discuss this with the significant others in our lives. Infertility is one of those taboos – not unlike miscarriage – where there are countless people who have experienced it. But nobody ever seems to talk about – not unless it was a problem years ago, and now resolved. 1 in 4 pregnancies miscarry. 1 in 6 couples will have problems conceiving. Lift up both of your hands and name 10 people you know. Statistically, two of these will have difficulty conceiving. That’s one hell of a lot! And yet, it’s just not talked about openly. And it’s because you feel like a failure,  don’t want people’s sympathy, don’t want people to know you’re trying in case there’s no chance you’ll have one of your own… and that’s just to name a few.

And so, this is my way, of not only being able to vent my anger and shed my tears, but hopefully share some positive experiences about the process, too.

This is my journey.