Back in hospital due to fitting

It’s nearly three weeks since my last update on the condition of our newborn baby daughter Abigail. Quite a bit has happened since then and I’d like to write a fuller update of events for you in the next day or two. In the meantime, I wanted to let you know about what's happened today. We were due for our first paediatric clinic appointment at 11am today with Abigail’s consultant for a check-up and progress review. The consultant gave Abby a thorough check-over and although physiologically she seemed to be doing well, concern was expressed at Abigail’s recent habit of turning her head quite violently to the right, stiffening her limbs and becoming very fractious. Abigail’s eyes also seemed to indicate again that all was not well.

We had been pleased that in the last week or so Abby had begun to cry properly for the first time, but in the last three days she has been quite miserable at times and nights have been very difficult. We had thought that she’d developed colic as she’d become very difficult to settle or feed overnight. Adding all these things together with her examination led the consultant to suspect that Abigail has been experiencing some sort of fitting again. The upshot is that Abby has been re-admitted to Queen Elizabeth Hospital today and is expected to remain there until at least Monday whilst doctors perform another EEG brain scan and put Abby on to a course of another anti-convulsive drug by IV line.

Obviously this is a big set-back for us having only had Abigail home for a few weeks. We’d also been pleased that she had seemed to respond well to being taken off her original medication completely before being discharged. The plus side is that at least an EEG is likely to be done relatively quickly – the consultant did say that she could order an outpatient test but that it may take 10 weeks to come through. With Abby being admitted it’s more likely to take a matter of days. Her current ‘fitting’ will not cause further brain damage but could impede her development and so doctors are keen to find out more as quickly as possible.

Abigail comes home

It’s been over a week since our last update when we received the dreadful news about Abigail’s prognosis. As a family we have very much been in grief and shock for Abby and her future, although ironically she has otherwise continued to flourish and grow despite her problems. Contrary to doctors’ initial expectations, she’s now completely off all medication and her feeding also improves daily. She is gaining weight well and is now around 7lb 11oz, up from her birth weight of 6lb 14oz.

At the beginning of this week Abby’s feeding tube was removed and she's been feeding very well from a bottle and her sucking reflex is certainly there now. Today’s brilliant news was that Nix, the children and I today collected Abby from hospital where she was discharged from Special Care. She has spent this afternoon and evening with us as a family and it’s a great feeling to have her home at last after nearly a month in hospital. This evening Nix gave Abigail her first proper bath and Rebekah and Joshua have been absolutely lovely with her and dote on her all the time.

SCBU nurses have suggested that Abigail should now be taken off her strict four-hourly feed pattern and switched to feeding on demand which could be interesting as she still doesn’t really make much noise and has yet to cry properly. Tomorrow or Monday we are hoping to take her for her first walk in the country.

The next few days, weeks and months could well be the easiest as far as her caring needs are concerned, but we have been promised all the necessary support, back-up and resources necessary by the hospital, paediatricians and the community healthcare professionals. It still remains to be seen the actual extent to which her brain damage will affect her, although we have been told that doctors fully expect her to be very severely affected in many ways. Nix and I are resolute though, that we are by definition able to provide her with the best possible care, and Becky and Josh will certainly be a large part of that as they stimulate and relate to their new baby sister. We have decided that for the moment we will not be telling the children anything specific about Abby’s condition, especially since we are in no position to give any definite certainties about what may happen. We are also very aware of ‘labelling’ Abigail, even for her own brother and sister – we’d rather they know her simply as Abby and not have any preconceived ideas.

We are both convinced that our best course of action for these first few months is to treat and care for Abby as a ‘normal’ baby and deal with any issues as they arise. To that end we will be seeking to offer her, Joshua and Rebekah as rich and as wholesome an experience of life as we are able.

Very bad news from the MRI scan

I’m sorry to have tell you that the results of Abigail’s MRI scan today were not good. The scan showed permanent damage to both sides of Abby’s brain as well as the part that deals with movement. The consultant in charge said that although the MRI now shows clear and irreversible damage to Abigail’s brain and that her long term prognosis is therefore not good, the extent to which that might manifest itself in her life was still unknown. Despite this, doctors say they fully expect Abby to have problems with her limbs and movement and that she may well have a severe mental handicap. Ironically, Abby’s feeding continues to improve and today she took a whole feed from a bottle. It seems that getting her feeding going well is now the only hurdle to overcome before she comes home.

This evening we've just returned from the hospital where we spoke to one of the consultant paediatricians. He was able to outline in a bit more detail the likely long term effects of the brain damage that Abby has suffered. None of it is good news. At this stage – and particularly with a very young baby – it is notoriously difficult to predict what might happen. That said, the consultant said he felt it very likely that Abigail will develop cerebral palsy and that she will suffer quite serious and severe physical and mental handicaps with that. He said that many functions including speech, development, intellect and communications could be very harshly affected. There might well be a period of relative ‘normality’ for a few months before any of these disabilities become readily apparent, but he felt convinced that it was highly probable they would.

Obviously, Nix and I are completely devastated by today’s news which really hasn’t sunk in yet to it’s full extent. But we have already pledged to each other that we will endeavour to provide the best possible care for Abigail as a whole family including Rebekah and Joshua. I must tell those of you that see us regularly that we’re as yet undecided about what to tell the children. Many of you may also know that we have recently been trying to move house. Needless to say that idea has been shelved for the time being.

Abby feeds from a bottle!

Nix continues to heal well despite a minor infection confirmed in her wound. She’s certainly relieved that her usual pre-natal insomnia seems to have gone and she can enjoy some better sleep at night – at least until Abigail comes home!

Last week after my update Abby’s condition seemed to plateau somewhat. Her overt external fitting and twitching had all but gone and she remained stable and monitored in her cot. Two things meant that we had a few ‘down’ days last week. The first was that of her feeding. Abigail's ability to suck and feed from a bottle was one of the big hurdles to her coming home from hospital and she just didn’t seem interested. She seemed to spend so much of the time asleep or very drowsy that she just wasn’t able to wake up enough to attempt sucking. Doctors were again unsure whether her drowsiness was the result of her medication or deeper problems. There was even concern from the medical staff that Abby’s actual sucking action may have been affected by the hypoxia (lack of oxygen in the womb) which would've meant that she might never suck or feed herself.

The second concern of ours was her eyes. Abby seemed to be opening her eyes quite a bit more (despite her drowsiness) but she often had involuntary and uncontrolled eye movements rolling into the back of her head. Obviously this was a very a visible sign of something not quite right and so it did concern us a great deal. Again, doctors seemed unsure as to whether it was her anti-convulsive medication or some level of brain damage.

The weekend brought much better news after the plateau of last week, though. On Saturday an extremely perseverant healthcare assistant managed to get Abby to finish about half of each of her first two feeds of the day from a bottle. This was fantastic news and meant that she clearly did have the sucking reflex there. Since then, she has been feeding from a bottle for some of her feeds every day and although the progress is often slow, it is at least a start.

Abigail does seem a bit more awake these last few days and is even making some tiny ‘normal’ baby noises. Although she still seems to have occasional involuntary eye movements, she does seem to be able to fix both eyes on something and focus as far as she’s able to at her age. Doctors have today undertaken an EEG brainwave scan which did pick up some small abnormal brain patterns that may be akin to very minor ‘fits’. This may well correspond to her eye movements.

The other good news of this week is that subsequent to the Monday ‘grand’ ward round, doctors decided that Abigail’s anti-convulsive medication would be stopped immediately. This is because of her improvement and the fact that she doesn’t appear to have fitted for about a week now. The medication will remain in her system for another week, so her effective dosage will not drop to zero instantly. Obviously, doctors will be monitoring Abby closely this next week to check for any abnormal activity again.

Abigail will undergo an extensive MRI brain scan tomorrow (Thursday) at 11am at Kings College Hospital in London. This is primarily to check for any structural abnormalities in the formation of the brain, but will not rule out any developmental problems even it the scan comes back perfectly clear. It will, of course, still be good news to know that her brain is all there! As one consultant put it to me: “An MRI will allow us to see that the brain is all there. It will not tell us if it’s all working.”

All in all, doctors continue to be pleased with Abigail's progress. In the short term, her next major hurdles are for her to really get the hang of bottle feeding so that she can be withdrawn from her tube, and that her MRI scan tomorrow is successful and clear. Rebekah and Joshua have both been able to see, talk to and cuddle Abby and are just as smitten with her as we are. Life is tiring travelling to the hospital once or twice a day but she is worth it, and whatever happens we are very grateful for the opportunity to care for such a beautiful little girl. I’ll endeavour to write another update in a few days after the initial MRI results.