It really bugs me that we went to our local Hospital to meet the paediatrician back in November and it took until January fort them to send the review letter; especially as GOSH manage it within 4 weeks! Nevermind...it's here now. I'm just glad I don't rely on their letter's should Martha Grace ever present at A&E.
I like typing up the letters here; I feel like I've kept them safe and we'll still be able to read them even years down the line. The Dr we met last time was actually really nice for a change; he seemed to actually know about Heart Conditions. Though he does lose a point for saying Martha has a congenital complex heart "disease"; she has a heart "DEFECT"...she was born this way - it's not a result of a poor diet or lack of
"I saw Martha who is 14 months old [she's going to be 17 months old on Thursday], with her Mother today. I was pleased to hear from mum that the Cardiologist in Great Ormond Street Hospital is happy with her progress from a Cardiology point of view. She has been subsequently weaned off from all of her medications. Her last ECG monitoring for 24 hours showed sinus rhythm or atrial paced rhythm without any suggestion of tachycardia. In terms of development she has started taking some steps with support. She can transfer objects and can reach for objects. There are no concerns about her vision or hearing.
On examination her weight was 8.24Kg (9th - 25th centile) and her height was 72cm (9th centile). Her saturations today were 93% in air. She was pink and well perfused. Cardiac examination revealed a grade 3 systolic murmur which is heard all through the pericardium. Her chest was clear with no signs of congestive heart failure and her abdomen was soft with no hepatomegaly. I am happy with Martha's progress, we will continue to monitor her and will be seeing her in 4 months time."
Now I have to be brave for our next appointment in London; it will be 6 months since Martha was last seen as we've never been that long before without Martha having an ECHO or Pacemaker check. To look at Martha the way she is on a day-to-day basis you'd struggle to tell there was anything wrong with her heart; as Heart Parents everywhere will tell you...the further away you are from your child's last surgery - the closer you are to their next one!
The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx