Thursday, 24 April 2014

On this day 24.04.13

The 24th April 2014 was the first time I've ever thought "this is the worst day of my life" and meant it (though there have been many days since then which have been far worse).
We'd already had an appointment at the Liverpool Women's Hospital the week before; we met with Dr Devinder Roberts who told us our unborn daughter had Common Truncus Arteriosis and a VSD. In our minds we were returning that day to meet with the Paediatric Cardiologist who would explain Martha's treatment; we'd spent the best part of the past few days researching anything to do with CTA and had started to accept what was happening.

The Cardiologist performed the Fetal ECHO and then we were asked to wait in the counseling room where
she would join us once she had made her report.

She entered the room and started drawing a picture in silence. No one spoke a word, we just waited for her to finish. She was drawing a picture of a normal heart one side and Martha's heart on the opposite.

I noticed that she had drawn a separate Aorta and Pulmonary artery for Martha's heart and felt myself relaxing, a relief came over me. However that relief was to be short lived.

She went on to explain that Martha didn't have CTA after all, just a very narrow Aorta which was interrupted but they couldn't see where the interruption was - which is why Dr Roberts hadn't been able to see it 6 days earlier. She also had a very large VSD that they wouldn't be able to close; she couldn't explain why - just said that they couldn't.

So even though they had found an Artery they didn't think she had - somehow she was worse off.

She then explained that the treatment we could offer Martha would be the Norwood Procedure - to give our baby a univentricular circulation and by-pass the narrow Aorta**.
Our baby would need an operation at a few days old and then again a few months later, she'd spend the best part of her first 6 months in Hospital. If she survived she would need the final stage of the Norwood Procedure at the age of 5, although she only had a 50% chance of actually making it to the third stage operation. She  would be cyonotic (blue) and would be very limited to what she could physically do. If she were to survive in to adulthood then we would need a miracle.

Or we could terminate the pregnancy. 

So I started crying. I couldn't understand how things could have changed so drastically. The week before Martha had one trunk serving as a Pulmonary Artery and her Aorta yet somehow she was better off then than she was now that they'd found her Aorta.

Mark pressed her for an answer as to why they couldn't close the VSD, she just replied that they couldn't. I asked her why couldn't they make her Aorta wider, surely they could have inserted a stent; but her Aorta was too narrow the whole way out of her heart - making it wider wasn't an option and it wouldn't be able to provide sufficient blood flow to the rest of her body.

The more we were talking the more I was getting upset, the more questions we were asking the more often her answers started with the words "I think..." which drove me demented until I finally snapped back at her "You are talking about my Daughter here - I need you to KNOW what you're talking about and not guess!"

She offered to send our ECHO images to her Colleague in Manchester for a second opinion, then we could make up our minds as to whether or not we wanted to continue with the pregnancy.

I was due to have the Amniocentesis that day to check for Chromosome 22 deletion but I was far too upset I just wanted to leave that horrible Hospital.

As we drove out of Liverpool I could feel our precious Baby Girl kicking and I couldn't believe that we now had to contemplate ending her life. How had it come to this? What had we ever done to deserve this happening? What had our Baby Girl done to deserve such a complicated heart.

That night we put Osh and Isabella to bed as normal; then we sat together and cried, loud sobs, sobs that came from the pits of our stomachs and the depths of our hearts. She was already our Daughter how could we end her life? But how could we bring her in to the world knowing the odds were against her?
GM
x

** back in April 2013 I didn't have the faintest idea how the human Heart worked. But since August my understanding is a little better. To my knowledge, the first stage is to connect the Pulmonary Artery to the Aorta - but Martha's Interruption was type B, which means between the Head and Neck Branch and Lower Body Branch. This operation (again, to my knowledge) would have been futile. When I spoke to the Cardiologist a couple of weeks later she admitted that she didn't know where the interruption was and probably wouldn't be able to tell until she was born. Was she wrong then to offer me the Norwood Procedure?

It took the Cardiologist two weeks to finally get back to me with the second opinion from Manchester. In the meantime we had already met with Dr Ian Sullivan at Great Ormond Street and had a clear plan on what was to come. 

I took great pleasure in contradicting everything she was telling me on the phone. When she told me that they wouldn't be able to see where the Interruption was in Martha's Aorta - I told her it was between the left Carotid Artery and left Subclavian Artery. When she told me that her colleague confirmed that a Univentricular circulation was the only option - I told her GOSH could close the VSD.

I ended the call by telling her that it was a disgrace that it took 2 weeks to get back to me with a second opinion which only left me 3 days until the 24 week mark. I informed her that we were not going to be bringing our Daughter to Alder Hey after all, that I was taking her to Great Ormond Street where we had already received a far superior level of care than what she had offered thus far. Now No lynch mobs please, I know other consultants and surgeons at Alder Hey are amazing - my issue is with the one we were seen by.

Her name was - Dr Caroline Jones