His story: Part two

Birth

On the 4th of November 2014 Idrees graced us with his presence. He arrived 3 weeks before his due date via an emergency c-section. S was incredibly brave and strong throughout the whole pregnancy and moreso during labour. She didn’t complain once and seemed to enjoy it all, including every symptom or contraction she had. We hadn’t realised at the time but through his time in utero, our son gave us so many wins. To even make it to birth here was a blessing in its own right. Some couples yearn all their life to know and feel a baby’s kick in the womb. We bonded so closely with Idrees in his safe haven, once he was out it felt like we had known him a while.

Once the prompt and well-considered decision for the c-section was made, S was taken in first into the operating theatre for the spinal injection and I was asked to wait in a small room. I remember thinking at that moment that the selfish life that I had lived to that point was officially done. I realised that I would very soon have a new purpose in life and that was to be as good a role model for my son and make mine and my family’s time on this planet count.

The operation took only a couple of minutes from start to baby’s birth. When Idrees came out we heard a roar of a cry. Instantly Sanam and I were in tears with joy. Even though I have always wanted to be a dad, I never felt entitled enough to think I would be lucky enough to hear my son’s cry. I will never forget that moment; it will always be the truly best moment in my life.

His story: Part One

Although fathers are often as completely involved and invested in their children’s lives as the mothers are, their stories are often unheard, especially when it comes to high risk pregnancies, in utero diagnosis and subsequent birth and infant loss. I asked A to offer his perspective, a father’s perspective, on our journey with the hope that his thoughts may help men out there dealing with something similar. This is his story.

The perfect life

Everyday, a little easier.

Why not me?

Today I had a breakthrough moment. A friend said she couldn't understand why bad things happen to good people and she found it remarkable I hadn't said "why me?" 

It made me think how deeply grateful I am for genetics, life experience, nature, nurture, learned behaviours, innate sensibility, whatever it is that makes each of us unique and makes our noggins work the way they do. 

I have never once thought "why me?" or "why us?" because it would insinuate that this whole experience and Idrees' existence was something to regret; something bad.

I can't imagine considering Idrees' birth and death as a 'bad thing'.

We have been incredibly blessed. 

We didn't for a second think "why us" when he curled his little hand around our fingers or when we got to cuddle him and he fell asleep happy as can be. 

We didn't think "why us" when he was born safely and let out the most almightily loud cry and scored 9 on his Apgar score. 

So if we're willing to take all the good, we can't exactly then turn around and say "why us" when things go down.

A part of me feels odd when people say "I am sorry for your loss". It is hard to articulate how little of a loss this is and how much of a gain the whole experience has been. 

All we wanted was a little win- I wanted to feel a baby kick, to see a baby wriggle around in a scan, to be able to give birth, to call another soul my own and know that I housed him for 9 odd months, to know that I was a mother. 

We got every win. He was not a loss, he was a huge , huge win.

What next?

So it has been two weeks almost since Baby Idrees arrived and then promptly left us too. 

My mum arrived two days after the funeral and my sister arrived a few days later. My sister stayed for five days and it was actually really nice having them here. My mum is here for another 10 days and once she heads back, my six week post c-section recovery milestone will be crossed and A will be back at work. 

We have just been trying to pick up the pieces and wonder how best to approach our lives after everything that has happened. 

We still feel so blessed and grateful to have had our baby boy for the five days we had him and to be given the gift of being parents. 

He may not be around but we will forever be his mum and dad. We both wanted, more than anything in this world, to just become a mother and father. We may not have the sleep deprivation, late night feeds, warm cuddles, occasional giggles and endless stream of nappy changes and babygro washing but do these things define parenthood any more than what we have been through?  

A legacy of five days

Ever since our beautiful little baby boy Idrees came into this world, blessed us with precious memories and then soon made his way to Heaven after passing away peacefully in our arms, forever five days old, the outpouring of support, love, best wishes and even tears from friends, family and even virtual strangers has taken me by surprise and had me in awe. 

We laid our beautiful little angel to rest yesterday, on an uncharacteristically beautiful and sunny winter's day. His funeral was incredibly moving and his father lowered him into his final resting place surrounded by so many family and friends with heaps more sending him best wishes from afar.

Today we pick up the pieces and start to think about how to continue on with our lives after laying our little gift to rest. 

Now an angel...

Baby Idrees

4/11/14-8/11/14

Forever beautiful and five days old, passed away in mummy's warm arms peacefully as if falling asleep.

Now happily in heaven, playing with angels and other babies and watching over his mum and dad.

Heartbreak

The most heartbreaking words you can hear as a parent: your baby isn't going to make it very far or long. 

So today we cry many tears but we also give many, many grateful thanks for blessing us with the gift of baby Idrees who is here despite all the odds and has given us countless moments of joy throughout his short existence. 

We aren't medics so some of what they say goes above our heads and watching him twitch and move, curl his little fingers around mine a part of my mum heart says "he is fine, guys". But the tests and scans and echoes and results don't really lie. 

Our choice is pushing him forward for a surgery he may never make it out of and struggle to cope with the effects of afterwards or to just let him decide when he has had enough of this silly, boring world and take care of him the best way we know how till then. 

My eyes are full of tears, heart full of a smile. We may only get to keep you a while, precious little beautiful one, but every single second has been more than worth it.

Birth story

My original due date was 22nd November, however due to baby's heart condition they needed to induce me for medical reasons on the 16th at 39 weeks to ensure the pediatricians and special care nurses were all ready for the lo as soon as he was born as he would need immediate special care at birth. 

I had several growth scans which showed he was average sized till my last scan at 36 weeks which showed hos growth had dipped and my waters looked low. They made the decision to move my induction date forward to 9 November (38 weeks) to make sure he was safer out than in. 

On Monday 3rd, at 37 weeks, went in for my final Doppler check to make sure my waters and baby were OK. Had the appointment in the afternoon and everything seemed fine and set up for induction on the following Sunday. 

Birth announcement

Baby Idrees has arrived surprisingly but safely into this world at 00:45 on 4th November.

He is impatient like his dad, so demanded an entry via emergency c-section but was born crying, breathing and a larger than expected 5 lb 15 oz. 

We haven't had a chance to touch or cuddle him to make sure he is real but pictures seem to be confirming this isn't all a mental dream. 

He is currently being transferred to Alder Hey Children's hospital for the start of his heart warrior journey ahead, leaving behind his mum in recovery, morphined up and constantly looking at his picture.

Itty bitty laundry

Normal is a funny word. If this were a normal pregnancy, I would probably be deep into nesting mode and buying up a storm. As it stands I'm cautiously adding only a very select few items to my online shopping basket all the while justifying to some invisible person "I'll need this no matter what happens to baby". 

When you have a pretty serious diagnosis for baby's health hanging over your head it's hard to throw caution to the wind and allow yourself to work on best possible scenario mode. 

Understanding HLHS

Once you have been given a diagnosis, there are two schools of thought. One is that ignorance is bliss and finding out too many details about your baby's condition can cause you to spiral, while the second is that knowledge is power and the more you know the better you will be equipped for most eventualities.

A has openly acknowledged that the world of congenital heart defects ("chds") in babies is one he has, to this point, been completely oblivious about. Having a baby is such a complex and delicate matter that there are a million things that have to occur in perfect sequence to have a healthy child. Yet thousands and thousands of perfectly healthy babies are born each day and most people can take for granted how complicated a baby's development really is.

I've known about CHDs through personal experience as one of my closest friends was born with a CHD and had her first open heart surgery when she was 5 months old. Yet I still wasn't aware of just how complex heart defects in newborns can be.

So for all our friends and families who have ever been curious about our baby's diagnosis or just want to know a little bit more, I thought this post could help outline what we are facing.

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.