A letter to Martha Grace || June 2016

My Amazing Baby Girl,

The half term holidays that I had been looking forward to for so long have been and gone. We didn't get to do anything of the things that I had planned because your brother was ill at the beginning of the week; by the end of the week, you and Isabella had caught the sickness bug too. We haven't sent you to school because we want to make sure you are over it properly first. But I do have the weekend off this weekend so I hope we get to make up for our missed days out.

School finished up early for you three because there were two INSET days in the final week before half term. I'm so glad we went out to Greenwood Forest Park on the Friday before anyone became sick. While we were there I checked my phone to find a text from your Daddy, "Call me when you can!" and I just knew why he needed to speak to me.

Martha, your letter from London has arrived - they've taken your case to the JEC meeting and your team have decided that yes - they think it's appropriate to plan further surgery. That even though you yourself are well, they are concerned about the progressive nature of the recurrent narrowing. They will either widen the outflow pathway like they did in October 2015, if that isn't possible then they might perform the Ross Procedure. They are also going to change your pacemaker generator during the same admission - possibly the same operation.

Part of me is absolutely devastated that you have to go through this all again, and another part of me is grateful that there is something they can do to for you and that they are willing to do it. I can't imagine how it feels to be told that there is nothing further which can be done to help your child, so Martha - while they are willing to help you we will give them every permission to do so. I have seen other Mammi and Daddy's lose their babies and I would be doing them a huge disservice if I didn't take every opportunity for you.

The letter says that there is no urgency about surgery, but that we should schedule it within the next 3-4 months before we get to next winter. If I can just get the summer Holidays and Isabella's 1st day at big school out of the way then I'll be happy and feel more prepared to take on Open Heart Surgery #5.

The final line of the letter says, "We are sorry that this has been a difficult problem, but we remain optimistic that further surgery can improve the situation." That's what we are clinging on to, Martha. That's why we will consent, why we are so glad we went to GOSH for our third opinion...because up to now we've had almost three years longer with you than we dared dream of on the day you were born!

I love you always.

Love from Mammi xxx 

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