Born January 2nd, 2005
Heather put weight on normally for the first couple of weeks but then was only putting on very slowly. She slept a lot, and was very quiet, “contented” we called her!
Because she had been breech, we were referred for a hip check when she was about 8 weeks old. That paediatrician in Gloucester picked up on her breathing and referred her to a cardiologist.
We saw the cardiologist 2 weeks later, Dr Tsai-Goodman from Bristol Children’s Hospital. She diagnosed that Heather had a hole in her heart, quite a large one, and prescribed diuretics, telling us to come back when she weighed 6 kgs. In the following week Heather lost 300gms. We were then admitted to Gloucester hospital for Heather to put weight on. As she wouldn’t take a bottle (she had been exclusively breast fed up to this point) they put in a naso-gastric feeding tube. This worked in that she gained weight, but it had a detrimental affect on her heart. She was in major heart failure and was described as “severe failure to thrive.”
We were transferred to Bristol Children’s hospital where they did some diagnostic tests as they knew that her heart defect (atrial septal defect with anomalous pulmonary venous drainage) would not cause the severe heart failure. They did an ultrasound of her head and discovered an AVM (later named as VGM).
After telling me how rare this was and how there are very few centres in the world that deal with it, we were transferred to Great Ormond Street and to the care of Dr Stefan Brew (Interventionist Neuroradiologist) and the neuro team on Starfish Ward. Heather had her first embolisation in April 2005, after decompensating following the general anaesthetic for the MRI scan and spending a few days in intensive care. This was very successful and her heart failure disappeared.
Five weeks later we were back as her heart failure had returned. After this embolisation, although it was successful, Dr Brew told us that more arteries had appeared that were draining into the Vein of Galen. We would have to go back again.
Heather had her third embolisation in July 2005 (just under a week after the bombs – not a great time to be visiting central London !). She is a different child! She is now rolling over, she has cut her first tooth, she is nearly sitting up on her own and we are well on the way to weaning her off her ng feeding tube! She is now 8 months and doing really well.
At the time of writing, she has been off the tube for a week and has lost weight but still seems well. The heart condition feels to be more of a worry than the VGM although it is more common. There is the uncertainty of the unpredictability of the VGM that is also a constant worry. All this has taught us to live one day at a time!
I would be really pleased to hear from other parents who’ve been through a similar struggle.