Special Babies (Pregnancy Complications)

Member Name: MaryanneH

Product:	Pregnancy Complications
Date:	26/07/04 (474 review reads)
Rating:

Advantages: All children are amazing

Disadvantages: See Review

The thing that upsets me most about the experience that I am about to relate is that I did everything right - I have never smoked, I am not a huge drinker - I even forwent my traditional stilton with my cheese and biscuits for my Christmas dinner the year I was pregnant with Emily.

Strangely, even though throughout the pregnancy the midwife told me everything was fine, the baby was growing ok, in the back of my mind I was thinking - I don't really look pregnant, I just look like I have eaten too many jaffa cakes (which as it turned out I had) I didn't feel well throughout the pregnancy, 'its fine, not everybody?s morning sickness goes away' reassured the midwife. the problem was mine didn't even go away in the afternoon. deep down, with the benefit of hindsight I knew everything wasn't 100% but as a first time mum I had absolutely no idea what to expect, so you go with whatever source of information and reassurance you can get.

I have related the story of Emilys birth in a previous review which is currently on ciao and I will post over here eventually, so I will commence this review at the point when following an emergency caesarian the nurse said congratulations its a girl and then left at a sprint out of the labour ward in the direction of the special care baby unit (SCBU) with my baby. she weighed 2lb 9.5oz (1.17 k.) and looked very splodgy. Andy, my husband, checked I was ok then on his way home to get some sleep stopped off at the unit, he was allowed to touch her but that was it.

Splodgy is not a particularly good word to use as a description, but even now looking at the pictures I cannot think of a better one, because she was so early her skin seemed almost transparent, which gave it this appearance. I don't remember her length, but from the top
of her head to her belly butto
n was the span of my hand (which for any pianists amongst you is one octave and 2 notes at a stretch)

As a rule of thumb, if you have a premature baby, you can expect to be allowed out at around about the due date, naturally depending on the circumstances. Having a special care baby is a bit like a series of small targets. They are fitted with a myriad of tubes and moniters, which I won't go through in detail because some of them are not particularly nice, but in general there is heart beat, feeding tube, drip and long line through which medicines are administered. All babys in SCBU are routinely topped up with Iron and Vitamins and they can have other medication that has to be given daily.

The first emotional experience to overcome in this situation is the fact that you are in the situation in the first place. This hits people in different ways - I was in this for the long term, there was no doubt about that from the beginning, so whether it was shock or denial I could not cry at this point. There is something about being in SCBU that even if you are there for a fairly minor check for example so the baby can spend the night under the sun bed to reduce jaundice, this can be a really harrowing experience. So don't be afraid to show emotion it can be worse to bottle it up.

The long term SCBU stay is an experience that I would not wish upon anyone. The ward where I was had different sections, a large intensive care ward where the main full incubators are kept then as baby improves you gradually make your way towards the exit by way of rooms that get a slightly less degree of intensive care. They always have at least one incubator heated ready just in case.

Emily started off in the large covered over incubator with two holes on either side so you can touch the baby and chang
e its nappy, I wa
s allowed to cuddle her for a maximum of about 5 minutes at a time in the early days before she had to go back in. One morning I went in and she was under the sun lamp with a little pair of baby sunglasses on - this is to reduce the level of Jaundice, but even amongst all the tubes she looked so cute.

All the time during the early days they are subjected to test after test after test, you can still see the scars on Emilys hands and feet where they took blood from her which when the veins are so small is a really difficult thing to do, they did xrays, brain scans and a newborn hearing test. Eventually they decided as a result of these tests that Emily was suffering from prolonged neonatal jaundice. My problem is I am a ?why? sort of person, I have to do research and work out the possible consequences. This can be a good thing, but in this case I should have just asked. Jaundice is caused by an increase in bilirubin, so I went to our home medical book and looked up both things ? this led me to a condition called kernicterus which in turn led me to cerebral palsey ? which in turn led to a complete panic. Naturally the first question I asked the doctor came out in a frenzy of panic, to which the doctor said ?why do parents insist on reading? Apparently the bilirubin has to reach a seriously high level to cause this and ours was no where near. They were however worried about the state of her liver which was underdeveloped, and at one point even used the word transplant which caused another panic. The liver is one of the cleverest organs in our body ? did you know that they can pretty much grow a new one with only 10% of a healthy liver which is why the Siamese twins who were joined at the liver had such a good chance of survival. Anyway at this point one doctor said her jaundice would go away on its own and I could go home tomorrow, with my baby. The
following day a
nother doctor decided she was not happy that it would and we were being transferred to the national liver unit at Birminghams Childrens Hospital ? and so the nightmare continued.

The staff at BCH are amazing and it was a very different atmosphere from SCBU, it was a main ward with some really serious cases of liver disease. I actually felt a fraud being there because Emily was positively healthy in comparison. The one thing that did seem odd, is in a ward of yellow, jaundiced babies ? I personally would not have chosen to paint the walls yellow as well, even if it was decorated with a Rolf Harris original! Well the tests continued, and whereas our local hospital had been fairly relaxed a blood test here and x-ray there here she had 4 days of solid, serious (and seriously expensive from an NHS point of view) tests. For me these 4 days were the serious low point, I finally broke down (in the middle of the high street) but Emily came through it all, they eventually concluded that there was nothing wrong with her except a slightly underdeveloped liver, which would improve with time, so we were allowed home.

This section is on advise, and now I have told my story I will summarise what I have learnt, in the hope that it may help anyone going through a similar experience. Being in SCBU you do become institutionalised, I knew my way around the stock cupboard better than half the nurses, I could replace the feeding tube and understood most of the machinery, but it does create a very false level of perspective. The reason Emily was actually transferred to Birmingham was because of the colour of her poo ? jaundiced babies have very pale poo. I was therefore obsessed to a compulsive level about every nappy change I did for the next 6 months and the slightest change in colour I was al
l set to
go down to the emergency ward. You also rely very heavily on machines, even the babies just visiting overnight have a heart monitor on them, so when you no longer have this luxury, you keep prodding them to make sure nothing has happened ? probably why Emily to this day doesn?t need much sleep.

How to get help, In Birmingham and I would imagine it is the same in other specialist hospitals like Great Ormond Street, they had people specifically trained to liaise with the parents and make sure they understood what is going on, what treatment the baby is getting and where they can get help and support. This makes life very easy, in the normal SCBU these people don?t exist and you have to try and find some of the doctors time to get the answers, but you must ask ? sometimes it can be the only way for you to relax. If the ongoing care of your baby is going to be more intensive as a result you may also be entitled to extra care benefit, and put in touch with various charities who can help, even to the extent of providing a carer to look after the baby for a couple of hours to give you a break, but whatever the situation if you need help ? ask for it, it does no-one any good if you bottle it up.

Finally, clothes for premature babies ? this is the most difficult thing to find. Newborn nappies go upto up to 7.5lb you can get small baby nappies for up to 5lb, this doesn?t help if you have a 2lb 9.5 baby and the small nappy does up around their neck. Boots did do a very small size up to 3lb, they also had some clothing in this size, I am not sure whether they still do. The hospital will also provide things if you are struggling, I went into the unit one morning, went to where she had been the day before and this baby was in a disgusting purple dress, ?that?s coming off? I said and proceeded to remove the dress, before realising that it was not my baby. If all
el
se fails, get the knitting needles out ? you have plenty of time when you are sat next to the incubator, although I really admire mums with other young family because I really don?t know how I would have coped the second time around.

Get to know the other mums, it can really help to have someone to chat with, and even escape with for a couple of hours. The hospital provide a family room and somewhere for parents to sleep over, the first time I was allowed to keep Emily in this room overnight the heart alarm went off ? so that helped my sanity!

Finally, trust your instincts, I knew something was wrong when I was pregnant, and I knew she was ok before they sent her to Birmingham. If you are not happy with something that is going on ? make them have another look.

Emily is now coming up for her eighth birthday, and is a very active, intelligent, musical little girl. She also has a very developed sense of independence and maturity that I don?t think she would have, had it not been for the experience of her younger days. I know that I am one of the lucky ones, an experience like this puts your whole life into perspective of what matters. I also know that many people are not so lucky, including some Dooyoo members and I hope my review has not upset you too much as that is not my intention. I wish everybody who has ever been in this situation all the very best that life can offer, and that is ultimately what our children do.

Thank you for reading and I look forward to reading your comments.

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