Tuesday, 30 July 2013

3 weeks and counting...

So here we are with three weeks to go, 4 shifts left in work until I become a Heart Mammi/ Mummy. In my previous pregnancies the last few weeks always dragged - I couldn't make them pass fast enough; this time around...the days are running away from me.
During the day I am fine, Osian (Osh) and Isabella keep me busy, I don't have time to worry or mope around.
Bedtime - I am an emotional wreck waiting for sleep to take over.
Is this my fault, is this my my punishment for selfishly wanting a third child? Should I have just been happy with the two I already had?
The guilt doesn't end there, I am consumed by the fact that in order to give Martha the best chance of survival it means leaving Osh & Isabella with family in North Wales while we travel to Great Ormond Street Hospital (GOSH) for weeks on end. 
How do you explain to a 7 year old (Osh) where Mammi & Daddy are going for such a length of time without worrying him? He is a boy with a real thirst for knowledge - he has to know why everything happens, how it happens and how things work. He won't be fobbed off with stupid answers, and he would think you stupid if you couldn't answer any single one of the millions of questions he asks through the day. Just being told the baby is being looked after in a Hospital in London will not be enough when he clearly remembers visiting his Sister, Isabella, the day she was born.
The dreadful thing is...regardless of what the Team of Consultants and Surgeons have told us to expect in the first few days/weeks, ultimately, it's not Us that has to physically go through it - it's not Us who need open heart surgery.

When the Sonographer at the routine 20 week scan told us there was a "problem" with our Baby, and referred us to Liverpool Women's Hospital - we were in so much shock we couldn't imagine what that actually meant!
After our initial meeting with Dr Roberts at the Women's, we felt a sense of relief that at least they knew what the problem was (Common Truncus Arteriosis and a Ventricular Septal Defect) and they know how to treat the condition.
When we returned the following week to meet Dr Jones, we thought we we're going to discuss the treatment and to see how Martha had progressed in that week. Now I've heard people use the phrase their "world came crashing down around them" and never have I understood what they mean...until that afternoon! The scan was performed in complete silence (apart from a few mutterings between Dr Jones and her colleague) and I prayed and prayed that this was a good sign. The first few minutes of our counselling session was also done in silence while Dr Jones drew pretty pictures of our Daughters Heart for us to compare to a "Normal" Heart. I almost leapt in the air when she told me there was a separate Aorta and Pulmonary Valve. However my joy was to be short lived, and Martha seemed to be in a worse situation than Dr Roberts had thought the previous week. While there was a relatively simple procedure to correct Truncus, as Martha's Aorta was so narrow and became interrupted - there was very little she could do.
She suggested the "Norwood Procedure"which from what I've read is more commonly used for Hypoplastic Left Heart Syndrome. However, this would leave Martha with only one pumping chamber (she has two fully formed, fully functioning ones), would mean she would be very limited in the exercise/ activities she can take part in, would give her a slightly "blue" colouring and would also only give her a 50% chance of seeing her 5th Birthday!!! She was going to need a miracle if she was ever to make it past her teens.
I wanted to scream at her, how could that be our only option??? How could she be worse off when they found a part of her heart they didn't think she had last week. When Mark asked her why she had to reduce her heart to only one pumping chamber - she couldn't give him an answer. Every answer she gave was started with "I think" - so I screamed at her that her "I think" meant Jack S**t to me, and that I needed her to KNOW what she is talking about.
We left that appointment with the feeling that our worst nightmare was about to become a reality, and we were about to make the hardest decision of our lives...do we bring our daughter in to this world knowing our time with her might be short; or were we better off being cruel to be kind, and ending her life before she ever had to feel any pain.

The 2 hour journey home from Liverpool was hell...the whole way I could feel Martha move around and kick me - it was the closest thing to torture I have ever endured. That night we sat together and sobbed, how could this be happening - all we wanted to do was complete our family, this was a much wanted and much loved third child - not an accident after a drunken one night stand.

The next couple of days passed by in a blur of tears.
Mark called Dr Jones asking her to pass our images to a colleague in Manchester for a second opinion. My Mam called my Brother's Dr (Dr Maite Esteban) who is based in GOSH and The Heart Hospital on Westmoreland Street. She was sure she knew of a Dr who was treating a child with Interrupted Aortic Arch (IAA) and VSD, she could call him on the Monday to see if he could help.
2pm on Monday I receive a call from Dr Ian Sullivan's office asking to call his secretary to make an appointment to see him, by 2:20pm on Monday - I had an appointment for the Friday at 2:30pm (they would have seen me at 9:30am on the Wednesday if we could have made it to London that early in the day.)

I didn't know what to think during the train journey to London, the last thing we wanted was to get our hopes up only to be given worse news than Dr Jones gave us. We read magazines, drank tea and tried to eat something to keep us going, none of us had much of an appetite - we were walking in to the unknown.

The scan was again performed in silence by a Sonographer, I didn't let myself look at the screen - I didn't want to know what they could see. A Dr walked in, we assumed this man was Dr Sullivan until he was informed him that Dr Sullivan wanted to look after us and he was not needed. He stayed in the room and watched the scan anyway. A few minutes later, Dr Ian Sullivan himself walks in...he was everything you imagine a Dr to look like, graying hair, glasses, white coat, stethoscope around his neck - I remember thinking "I'm going to like this man" 

Once the scan was over we were asked to wait in the counselling room and Dr Sullivan would meet us there. He introduced himself and started asking questions about my Brother's (Gavin) heart conditions and treatment (he has Hypertrophy Cardiomyopathy amongst other things). I couldn't understand why we were discussing Gavin.

Finally he came out with "We agree broadly with Liverpool". He summarized that yes she did have IAA (and they could see where it started) and she had VSD. He then outlined what he proposed to do about it.
He wanted to administer a drug as soon as Martha is born to keep the arterial duct open, and when she is a couple of days old perform surgery to close the VSD (Liverpool wanted to keep this open), patch the interruption with Donor tissue and use the arterial duct to feed blood to descending aorta.

It seemed so simple.

Naturally we were full of questions...

Liverpool had said her aorta was too narrow to do anything with!
Dr Sullivan told us he could widen it!
But Liverpool had said that was not possible!
Dr Sullivan could widen it.
Ideally they need it to be 6mm wide, they can work with 4mm - at 22+3, Martha's was 2.5mm wide, he was confident it would grow as she grew.

Liverpool told us Martha would spend her first 6 months in hospital!
Dr Sullivan told us to aim for 3 weeks.

Liverpool told us she would have a very limited quality of life!
When I asked Dr Sullivan if she would be able to join her Brother and Sister outside to play in the Garden.
His reply
"Well I'd like to think my team of surgeons here can do that, yes"
Then, I cried - that is all I want for her, to be just like the other two, not confined to a wheelchair or needing an oxygen mask&tank after taking a few steps.

When we mentioned the Norwood procedure that Liverpool had suggested, he shrugged his shoulders and scrunched his nose and said "That would be our last resort"

He was anxious to point out that there was a strong chance she would have Chromosome 22 deletion (DiGeorge) but if they knew of a way to pull off this amazing surgery, we would find a way to bring up a child with this syndrome - she is our daughter and we would love her all the same, we would cross that bridge when we came to it.

He does this procedure on average once a month. This was another of my worries alleviated - I didn't want her to have a condition no one had ever heard of, or require surgery no one's ever attempted before.

She has a chance, a team of amazing Dr's who were willing to take us on.
My mind was made up - we were coming to London to give her that chance.
It's not false hope, we know the risks, we know there is a chance she may not survive the surgery. But if she does survive the surgery - she had a decent quality of life at the end of it.

The train journey home was strange...i felt different, like a great weight had been lifted off my shoulders.

For a few days I was elated and over the moon, we were going to fight, I was 22 weeks pregnant and I could finally start telling people we were having a baby.

I could start looking forward to bringing her in to this world :-)

GM
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12 week scan

20 week scan


28 week scan