Nine months at home and eighteen months old

Just before Christmas we had an appointment with a paediatric neurosurgeon at Kings College Hospital to discuss our concerns about the shape of Abby’s head. When she was born we thought she had an unusual bump at the back of her head, but this wasn’t really picked up by medical staff until she was an in-patient in January when the bump had become much more pronounced. X-rays were taken at that time but no obvious cause was found. As she grew her head became more and more irregular in shape. The consultants at Guy’s wanted to do a 3D CT scan of her skull but this was overruled by the neuro radiologists who said that the brain damage was the reason and the bump was preferential brain growth. Whilst this was likely it didn’t explain why the bump was there at birth when the brain insult was believed to have happened just the day before she was born. Eventually Dr Hughes at Guy’s said that she could not convince the specialists there so “would take another route” and referred us to Kings.

In the meantime we had been reading on the internet about a condition called craniosynostosis. This is the premature fusion of the skull bones and pictures we saw looked just like Abby’s head. The neurosurgeon examined Abby and agreed that she did indeed have craniosynostosis and that every suture join in her head had fused incorrectly. Rather than this being preferential brain growth, however, he believed that it was actually the result of her brain shrinking after the damage. He also thought it highly likely that the back plates of her head had fused before birth. Surgery for this is not an option for Abby as although the condition can be corrected in a healthy child, it relies on the brain growing rapidly and this wouldn’t happen with Abby. When asked if this was a possible cause of the original brain damage he said that it was a “coincidental association but not directly causal”. Dr Hughes, who also attended the appointment, said it could have been a marker to some damage occurring earlier in the pregnancy and that whatever happened the day before birth was the catastrophe which caused her to stop moving in the womb.

So now we have a few more pieces of the jigsaw but have to accept that we’ll never know exactly what happened. This is very frustrating and makes it a bit more difficult to deal with.

On a more positive note, she started at an Early Intervention Centre at the beginning of February. This is a fantastic place for children with wide ranging special needs from mild to severe. There are a maximum of eight children there on any one day and they have either one-to-one or two-to-one care. Abby goes for two days from 10am till 3pm. At the centre she receives physio, speech and language therapy, music therapy, vision impairment therapy, hydrotherapy, sensory room input and postural management. Abigail was getting most of these services at home but now there is a much more cohesive approach. Some of the therapists are the same as she was having at home so there has been some continuity in her care. Nix thought she would have loads of free time once Abby started there but this isn’t really the case – the day just seems to be one long school run with about an hour and a half child free!

The first few days Abby was there she seemed to sleep most of the time which was frustrating as we’d been on the waiting list since she was born and were desperate for her to have the input. But we’ve just started a new feeding regime which means that she’s now fed for twelve hours overnight with four smaller feeds during the day. This seems to have improved her night time sleeping and she does seem to be more alert during the day. This regime also seems to have the added bonus of a reduction in the need for suction which is fantastic news. Since Christmas we have noticed her needing less and less suction and now we can sometimes go up to three days without having to suction her, whereas at one time we would’ve needed to do it after every feed.

We have also seen small improvements in Abigail's development. Her head control is much better now – she still had a very strong head turn to the left but she does move her head much more now and with better control. Last week Nix accidentally cut the top of Abby’s thumb whilst trimming her nails and for the first time in months Abby cried. In fact she positively sobbed with real tears and with quite some intensity! Nix was obviously distraught because of the pain inflicted but also overjoyed that she expressed it! Since then a connection seems to have been made in her brain and she has cried more frequently, showing definite disapproval of being undressed, put in the car seat, etc. She’s also become more consistently responsive to specific stimuli. For example she tries to smile when we rub her hands and she has learned to anticipate this with “ready, steady” and “1, 2, 3”.

Abby is not as ‘tactile defensive’ as she once was. She’s had to get used to sudden hugs from elder siblings and the noise they make no longer seems to surprise her. She used to be very oral sensitive but she’ll now allow us to touch her mouth and give her kisses much more readily. We are hoping to give her some tiny tastes of baby food soon but this is more for the experience than the nutrition.

Abby continues to surprise us with her tenacity. She has not succumbed to the colds that many of us have had this winter. The one or two she has had have not presented her with too many problems even when they have gone to her chest and antibiotics have been required. We had a regular out-patient appointment with Dr Hughes (Abby’s paediatric neurologist) at Guy’s yesterday and she was very happy with Abigail’s progress. She slightly increased one of Abby’s five medications, but this is simply because Abby has put on so much weight.

All in all, although life can be difficult and emotionally and physically demanding, we are coping the best we can in the circumstances. Rebekah and Joshua are very happy and seem well adjusted. They’re aware that Abby is different to other children but seem to be unfazed by it. To them she is just their little sister Abby and they adore her. Long may that continue.