A walnut heart

The story begins in 2007 when we (A&S) first met and fell in love. A shotgun engagement a year later followed closely by the most epic big fat Indian wedding in 2009, we began our lives together in the beautiful North West of England.

Days turned to weeks, which turned to months and then years and before we knew it, we had marked the transition from carefree student life to adulthood with establishing new careers, purchasing our first home and cementing our relationship on a bedrock of the three things that all happy marriages must hold in some measure: patience, laughter and a shared sense of adventure. We traveled and studied, growing together with love.

Soon the biggest adventure of our lives to date beckoned and we decided, as many young couples do, to try to have a baby.



The road wasn't instantly easy for us and so after a few devastating early miscarriages, we got our surprise positive on a home pregnancy test on the 17th March 2014, amidst new work opportunities and a hectic life, somehow we found the time to make a baby!

Only a woman who has gone through previous miscarriages can truly appreciate those nerve-wracking first few weeks of pregnancy, from finding out to the earliest possible reassurance you can get. I held it together somehow through a new role at work, busy travelling, and a final exam for a professional qualification. Every night I would wake randomly at around 3 am and my first thought would always be "please let this baby stick around". And stick around he did.

As you pass milestone after milestone, you start to relax and convince yourself that this time it really could be it. You start cautiously talking about the baby as if it actually exists, and not solely in your desperate hopes.

All was well until the 4th July, our 20 week scan, when the first few minutes we saw a jumpy, cute little thing bouncing about happily and giving the ultrasound technician a run for her money. The experienced technician measured everything and we were given the wonderful news that we were expecting a little baby boy. Just as this news was just about being digested, a moment's hesitation and the technician called someone in to have a look at some part of baby's development.

Hushed whispers and pointing, lots of pictures and quiet mumbles...it was obvious there was something wrong, when we heard those unforgettable words "there seems to be something the matter with baby's heart, its a little unclear, I want to refer you to a specialist" and before we could ask much more, we were ushered into a little separate quiet room.

Anyone who has been to an empty quiet room at a busy ante natal clinic, with its pink and purple chairs and no kids running about or pregnant women in various stages of discomfort, knows that this is both the best and worst thing in the world. 

The best because the last thing you want is to face people as the rug is pulled from your feet, and the worst because you know in the sticky quietness of the room lies fear, dread, apprehension and certainly bad news.

The midwife came in, took my hand in hers and proceeded to tell us that our baby had all the evidence of a congenital heart defect. A particularly severe one called Hypoplastic Left Heart Syndrome which means the left side of baby's heart is likely to be greatly underdeveloped. They wanted to be sure so referred us to a specialist to have a fetal heart scan done to confirm.

Despite the midwife's most somber efforts I waded through a pool of denial at first, telling myself "don't be upset, everything is fine, the midwife is just being silly, they couldn't even get a proper picture because our baby was so bouncy" but armed with literature and a scan appointment in five days time, reality slowly began to come afloat the denial pool. 

We left the hospital armed with an appointment in five days. I cried, researched, cried some more, sent messages to everyone eagerly awaiting news, cried again, ate dinner, cried throughout, held onto my husband, cried some more. The first three days were a haze of google, the British Heart Foundation website, heart diagrams and lots and lots of hot salty tears.

Prognosis wasn't looking good if it was HLHS. It is the most severe and complex heart defect with no known remedy in the long-term and in the best case scenario, a series of 3 risky and complex open heart surgeries in the first 3 years of life, with the first of the series conducted as soon as possible after birth.

We had three possible outcomes:

1) Baby has a higher risk of in-utero immediate death from weeks 20-39 of pregnancy resulting in a still birth

2) Baby reaches full term and is born, but is poorly in another way (perhaps a chromosomal abnormality) underweight or in any possible way not robust and healthy and over 7 lbs and is not a possible candidate for surgery and would only be given compassionate care until he eventually passes away within 6-8 weeks of birth

3) Baby is a full candidate for surgery, and makes it to the first surgery within days of its life. The surgeon must work a complex technique to operate on the walnut-sized heart and the resulting complexities and complications give a post-surgical survival rate of about 50%.

These were our options and the hot, salty, flood-like barrage of tears kept coming.

Until one day just very shortly after the confirmed diagnosis, we both decided the tears would stop and we would be nothing but positive and optimistic and prepared for each of the above three outcomes.

Our baby may only have half a heart, but this too was a blessing and everything that happens next will be nothing but a blessing for us and our little boy.

So that is the story so far. 

This was where our journey, and our blog begins. I will be recording all those hopes, fears, worries and lessons learnt through this unique ride of becoming heart parents with the hope that someone out there will find solace and hope. 

Our little blessing continues to thrive and grow, often kicking up the most manic and healthy storm inside my belly, reminding me everyday that even with half a walnut-sized heart, our baby is a fighter.