Saturday, 3 May 2014

On this day 03.05.13

We should have been the happiest couple in the world. We'd exchanged contracts and had the keys to our first home on the 1st of May and Baby number three was on her way. But we couldn't enjoy any of it.

We were still waiting for our second opinion from a Consultant in Manchester, but in the meantime Mam had phoned Gavin's Consultant to see if she knew of anyone who could help us. So on that Friday morning we were on the train making our way to meet Dr Ian Sullivan at London's Great Ormond Street Children's Hospital.

Part of me was worried that I was setting myself for more heartbreak. Then I reasoned that the options that
Liverpool had left us with were either terminate the pregnancy or a 50% chance that she wouldn't make it to her 5th Birthday - surely anything we were going to be told in London that day couldn't be any worse than that. But still I was nervous.

A Technician came to the waiting room and brought us through for the scan. As she began a Consultant walked in and pulled up a chair next to her, she promptly informed him "No, Ian is taking this one." and with that he was gone. A few moments later an older gentleman walks in; glasses, greying hair, white coat and a stethoscope around his neck. He introduced himself and spoke with a true home counties accent and I can remember thinking to myself - I'm going to like him.

Dr Sullivan and the technician spoke amongst themselves during the Fetal ECHO, I couldn't bring myself to look at the images on the screen. When they were done we were asked to wait in the counselling room where Dr Sullivan would join us shortly.

He may have only taken a few minutes but it seemed like a lifetime to me, I just wanted to know what he had seen and what he thought.

He shook each of our hands and sat down, but he began asking questions about Gavin's heart conditions. I let my Mam do the talking, but I was confused - was he trying to tell me that our baby had the same problems as my brother?

Then Dr Sullivan began, "We agree broadly with what Liverpool said." and my heart sank a little bit, I had been hoping they were wrong. He explained that Martha did have an Interrupted Aortic Arch type B - which is between the left Carotid Artery and the left Subclavian Artery, as well as having a very large Ventricular Septal Defect. So again we asked what could be done.

This is the amazing bit...once the baby was born we would immediately be started on an IV of Prostin which would keep her arterial duct open to allow the blood to flow to the lower half of her body until she could be operated on. She would need surgery ASAP after birth where they would patch the interruption with donor tissue (we have soon discovered this was human tissue) and close the VSD with a Gore-Tex patch.

So Mark challenged him; Liverpool had told us that the VSD couldn't be closed. Dr Sullivan said they could.
Liverpool had told us her Aorta was far too narrow to provide sufficient blood flow. Dr Sullivian agreed it was slightly narrower than it should be but they could work with it. He told us that ideally he would like her Aorta to be 6mm wide but they could work with 4mm; that day at 22week gestation Martha's was already 2.5mm so I felt like she had a good shot at making it to 4mm. 

We asked how long would be need to stay in Hospital for, he told us to aim for 3 weeks (we were in fact home just over 2 weeks after her operation).

But the most important thing for me was that our baby would have a physically normal life, I wanted her to be able to go and play with her friends and join in at play time in school; when I asked if this would be possible for our Daughter he shot me the filthiest look and replied "Well, I'd like to think our Surgeons could give her that!" That's when I cried, relieved!

He warned us that with her Heart Condition there is a possibility she may have DiGeorge syndrome. One of the signs is that a particular gland is missing from the baby's chest area, and he's not been able to see it on our baby during the scan that day. Even if I were to have an amniocentesis the results would take three weeks to come back and we're almost at 23 weeks.

We shook his hand and thanked him for his help saying we'd be in touch. We decided to go to the Lagoon for a panad, I think I may have been smiling. I don't think either one of us spoke about the appointment until we had our cup of tea in front of us. Mark had always said that the ultimate decision was mine which I appreciated but I didn't want to decide on anything if there was a chance he wasn't happy with the situation it would leave us in.

We all remembered different aspects of the conversation, but one thing we all agreed on was that we felt much more hopeful that day that we had the week before leaving Liverpool.

Yes there was a 5% chance that the baby wouldn't survive surgery, but if she did survive she would be left with a much better quality of life. Dr Sullivan had told us that day that there was something they could do to help our baby  - there was no way we couldn't give our baby that chance. If we'd have terminated the pregnancy after that appointment, I'd have spent the rest of my life wondering what the outcome might have been and I couldn't live that way. If the worst was to happen during or after surgery, at least we would have tried to save her, at least we had given her the chance. The decision was made.

I felt different on the train on the way home that night, as though a huge weight had been lifted off my shoulders. I even let myself announce our pregnancy on Facebook but had to let everyone know the challenges she also faced.

Yep - we we're coming to London.

GM
x


Little Hearts Big Love