Rebecca Ann Rose
My pregnancy was quite normal, very early in my pregnancy I did suffer from some pains - like a permanent stitch - so we had some early scan's, the first indicated that the egg (as that is all it was in the beginning) didn't seem to be as advanced as it should have been but a week later another scan showed that things seemed to be ok. Apart from frequent hiccups, both myself and the baby seemed to get them a lot, all was well. I did mention several times towards the end of my pregnancy that the baby seemed to be getting hiccups lots of times every day but no-one thought that this was a problem.
Rebecca Ann Rose was born on her due date, 28th December 2002 - a five percenter they called her as about 5% of babies are born on their due date.
The labour was as straight forward as any labour is, I had wanted to have the baby as naturally as possible as I had done with my boys but it was not to be, the pain was so great that I had to have an Epidural. The Epidural worked well and I had it topped up several times but towards the end I told the midwife that I could feel things and that I felt like I wanted to push and we decided that I would not have the Epidural topped up so I could experience giving birth to the baby as I had planned - the pain wasn't that bad because of the Epidural but I could feel everything and it was a fantastic. My waters had not broken properly so the midwife had to break them for me and a Paediatrician was called for the actual delivery as there was Meconium in my waters, the baby swallowed some Meconium but I was told I had a healthy baby daughter, we had to stay in hospital for over 25 hours as Rebecca had a temperature and babies that swallow Meconium are monitored before they are allowed to leave. Once the Paediatrician was happy with Rebecca - although she was a little Jaundiced - they let us go home. Rebecca had a strange cry, very quiet, but we presumed it was because she had swallowed some Meconium and was husky because she had quite a lot of mucus on her chest. Rebecca was making good progress although she was jaundiced for a couple of weeks the only other thing we found different was that she was still very quiet and her cry was so quiet you had to listen carefully for her crying and use the baby monitor even if you were in the same room! I kept mentioning the fact that Rebecca seemed to strain to cry and that it was very quiet, a little like a cat when it cries, we never had that new born cry from Rebecca and she was so very quiet, eventually after many people had mentioned her cry we got the doctor to look at her and they decided we should have her looked at properly so he referred her to the E.N.T (Ears, Nose & Throat) Department at the Leeds General Infirmary. Rebecca was also referred to the hospital as she had a Blocked Tear Duct but this resolved itself by the time she was four months old.
We had a few concerns over Rebecca's feeding as she was only having very small feeds at a time so I was feeding her constantly, she would feed then not want anymore but 10 minutes later she would be looking for more, she was a very content baby though and was gaining weight so we put it down to my milk maybe being a little weak but decided to persevere for a little longer. I decided to start extracting my milk so Dad could feed her to see if that made a difference but she still only had small amounts - she never ever drank more than 4oz at any one feed. I tried to top her up on a night so she would sleep through the night but that made her sick, it was like one mouthful too much and it would all come back up.....like when you fill something up and when it is full it overflows......that's what Rebecca was like but would also bring back all that she had just had and I would have to start all over again. Rebecca's breathing started to change and she started making noises when she breathed in and we noticed that she was much happier if she was upright or laid on her front at about a 45 degree angle, we took her back to the doctors and found out that her breathing etc was because of something called Stridor and we were sent to the hospital that day where we found out that it was most likely she had something called Laryngomalacia - Floppy Larynx Syndrome. Rebecca was three months old. We were referred to the E.N.T department and had to wait for an appointment to come through.
Rebecca seemed to have lots of symptoms, she had squeaky breathing that got louder when she was crying, playing and when she was excited, she sometimes had it when she was laid on her back. She had a hoarse gruff voice. She didn't sleep through the night as she woke up for feeds two or three times a night, she had weight loss and poor weight gain, feeding was very difficult, she choked and gagged quite often and it took forever to feed her as she only fed a little at a time - I had to feed her about thirteen times a day when she was breastfeeding and over seven times a day when I started weaning her, she was sick nearly every evening and was always pale. Rebecca’s cry was different from the moment she was born and stayed that way until she was over a year old. Rebecca liked to be laid at a 30 or 45 degree angle on her front and she liked to be sat up.
It took two weeks for our appointment to come through to see the E.N.T consultant (Mr Knight) and the Leeds General Infirmary and it took only three and a half weeks for him to take her in for investigations. During the investigations (Microlaryngoscopy and Bronchoscopy) they found that she needed an operation (Aryepiglottoplasty) to put right her Laryngomalacia - Mr Knight did the operation there and then and Rebecca recovered well from the operation, although a couple of hours after the operation her SAT's went down a bit and she went very limp and pale, she improved dramatically after she had been given oxygen and we took her home the next day to recover. The only change we noticed after her operation was that she seemed to have a different pitch to her voice when she babbled and her cry was a little louder, Rebecca was very very quiet for the first four months of her life and didn't make many noises, she never giggled and sounded hoarse all the time. A month after the operation we went back to see Mr Knight and because Rebecca still had a lot of symptoms, some new, he thought she had Gastro-Oesophageal Reflux so he referred us to a Paediatrician at St James' Hospital, Leeds for further tests.
Rebecca was still sick at meal times but did not seem to have as much wind as she did before - this was probably due to the Infant Gaviscon she was prescribed for the Gastro-Oesophageal Reflux. If I was careful and I did not over feed Rebecca and gave her food little and often I could stop her from being sick but I could not keep her weight gain balanced. Rebecca's appointment came through for us to see the Paediatrician but when we went we didn't get to see the consultant but one of her 'minions'......he told us that Rebecca looked fine (she has always looked well right from when she was born, just pale) and that her eating habits were probably caused by me and that seeing a dietician would help, he was very unhelpful and we were very upset with the things he was saying, we were not happy and we told him that we wanted some tests doing as we knew there was something wrong, the Paediatrician disagreed with this but we insisted saying that if they found nothing then we could rule that out and try something else, he said he would have to speak to the Consultant about a Barium Meal Swallow. Not long after we got an appointment for Rebecca to have a Barium Meal Swallow done at St. James' Hospital, Rebecca was eight months old when she had this done and it was the worst thing in the world, it was awful to see and hear her in so much distress, this test started at about 10am and finished at approximately 8pm - we had to keep taking her back for more X-rays as the Barium was taking so long to get through her system, they took over 250 X-rays of her. A couple of days later I received a telephone call from the Paediatrician Consultant saying that I had to take Rebecca to hospital that day as they were expecting us and she had something called Intestinal Malrotation - a twisted bowel. Imagine the shock of being told that on the telephone after you had been told they didn't think there was anything wrong with her. We took her to the Leeds General Infirmary where we saw a Paediatric Consultant called Mr Powis, such a lovely man, he told us that we should come back in five days time for him to operate on her. Mr Powis carried out an operation called a Ladd's Procedure which would correct the Intestinal Malrotation and he also removed her Appendix as it was on the left hand side under her ribs - this was all done by keyhole surgery and was a success, Rebecca ate 50% better than she ever did before and she no longer cried for no apparent reason, she was much more content in herself and her body was much more relaxed. Mr Powis said that she was obviously in some discomfort and she probably cried and cried because she had a blockage which stopped her food from going down properly, probably due to her bowel twisting - when she did this we used to jig her about to stop her from crying and Mr Powis said this may have untwisted her bowel, luckily the bowel never twisted fully and Rebecca had the operation before the condition became life threatening.
Unfortunately when Rebecca had her operation for the Intestinal Malrotation she got a bad urine infection which made her stay in hospital a little longer, she had to stay in for five days.
Rebecca had problems with her water works for a long time after, every now and then she had a vaginal discharge that looked like puss and more often than not her nappies were quite dry. Rebecca has had a DMSA Renal Scan an Ultra Sound Scan of her Kidney's and an x-ray of her Kidney's, these all came back clear and so the consultant took her off the antibiotics, Trimethoprim, and everything seemed to go back to normal, Rebecca was still getting sore every now and again but there was no cause given. Rebecca is now on Zantac (Ranitidine) as Mr Powis still thinks Rebecca suffers from Gastro-Oesophageal Reflux, he wanted to see us again in May 2004.
We saw the Mr Powis in May and he has decided to do some more investigations, using a camera he is going to look at her digestive system (Endoscopy) and is also going to check out her bowels as Rebecca is suffering from bouts of constipation. While we were waiting for this appointment to come through Rebecca started getting severe wind, lots of hiccups and bad constipation and the doctors requested a quicker appointment but it never came through, Rebecca was put on some medicine (can't remember what it was called) to help her sleep as she was having major problems going to sleep before 11pm on an evening, she would wake frequently during the night and get up early in the morning, probably as a result from being uncomfortable due to her symptoms. Eventually her appointment came through and in September 2004 she had her investigations, her bowel seemed to be working normally but unfortunately as Rebecca has several kinks in her intestines it was impossible for Mr Powis to see what was going on with a camera so he took a biopsy and made an appointment for her to have another Barium Meal swallow.
Rebecca had her Barium Meal Swallow on 11th October 2004, and because of her age it was not as bad as the first one and only lasted about an hour, at the time they couldn't find anything that would suggest why Rebecca suffers from severe hiccups and wind and why she only eats little and often. Our appointment came through for us to see Mr Powis for her biopsy results and we saw him in December 2004, he was pleased with Rebecca's progress and told us to put Rebecca back on her medicine (as we had taken her off to see if it made a difference) if we noticed a change over the next couple of weeks. Mr Powis told us that he did find that Rebecca's lower oesophageal sphincter that keeps her food down is lax, slightly open, which is why her food tries to come back up again which is why she suffers from acid indigestion and gets wind and hiccups so often. We have had to put Rebecca back on her medicine as without it she seems to suffer more with wind and hiccups and she eats less. Rebecca seems to be doing very well - let's hope she grows out of this. We see Mr Powis again in March 2005.
March 2005 came and went and we did not see Mr Powis, he has been very busy and has only seen urgent patients at present, I rang and was told that we should get an appointment in April but that did not materialise either. Rebecca seems to have been fine - well nothing any different - so we have not pushed for an appointment.
At the beginning of May Rebecca had another urine infection, we took her to the doctors and she was put on antibiotics and a sample was sent off, the results came back saying that they did find an infection in her water but the antibiotics should have sorted it out, since then she has complained of being sore and she is suffering from more bouts of constipation, we tried her off her medicine again but had to put her back on it as it defiantly makes a difference to how she sleeps, eats, behaves and it seems to cut down the hiccups and the wind. It is now June 2005 and we are still waiting for an appointment to come through to see the consultant. Rebecca is now complaining of being sore more frequently and has had more days when she doesn't seem to have a wet nappy and complains even more. Today (5th July 2005) I took Rebecca back to the clinic to see the doctor as she was very sore last night and crying because it hurt so much, it looks like she has yet another urine infection - we have some more antibiotics to give her once we have got a urine sample from her (which isn't an easy thing to do when she is dry or just dribbling because of the infection). The doctor has put her medicine she has for her Reflux up from 1.3ml to 2ml as Rebecca seems to be hiccupping and burping a lot more just recently and she isn't eating as well especially on an evening, if that doesn't make things improve we can put it up to 2.5ml until we see Mr Powis again (the Health Visitor is now taking this up and trying to get us an appointment to see him). Rebecca now weighs just over 2 stone which is average for children her age so she seems to be doing well with the food she does eat.
At the end of October Rebecca became quite poorly with a temperature of 39.5, it was suspected that she had another urine infection as she was saying she was sore, we spoke to several doctors over the phone but as it wass early and the change over from 'on call docotors' to surgery opening times we had to wait to see a doctor - once her temperature had dropped we took her to the surgery and got some antibiotics for her, she took these for a couple of days but she wasn't getting any better and we couldn't get a sample from her as she was just dribbling, she was prescribed different antibiotics and they seemed to work but Rebecca seemed to be left with a problem of not passing water at all during the day, we kept taking her back to the doctors but they said they couldn't find anyhting wrong with her. On Monday 7th November I managed to get hold of Mr Powis' secretary and she got back in touch with me to advise me to take her down to A & E - but not to say that she had recommended us to do so..... That afternoon we took her to the hospital but they couldn't do anything until we got a water sample, they upped her medication for her constipation and we went home. We managed to get a tiny water sample from Rebecca while she was asleep that night and we took it to the hospital the next day, the hospital rang that afternoon to say they thought she had a water infection and they sent the sample off for cultures and told us to take Rebecca back into A & E the next day for a scan.
Rebecca had her scan and they found her bladder and her kidneys to be fine but found her bowel to be full, this was pressing on her bladder which was stopping her form passing water - depending on what position she was in. The hospital upped her medication for constipation again to see if they could remove the blockage and sent us to have her bloods done - checking for everything.
Rebecca was back at the hospital again on the 16th November for an x-ray of her stomach, she was still having major problems and saying her bottom was sore all the time, the x-ray revealed so much 'poo' it was unbvelievable, there was so much it was not just her bowel that was full but her intestines too - there was so much it was no wonder she didn't eat anything, she was so full there was no-where for it to go, this would also explain the terrible cough she had especially when she was laid down - once she was sick and we thought it was going to come up that way....it was awful!!!! The hospital decided to put her on som estronger medicine called Movicol - to try and shift the blockage, this came in sachets which was increaed ever day - starting with 2 sachets and going up to 8 a day which would take just over a week, in the meantime we got an emergency appointment to see her consultant the next week. Rebecca's results from her water cultures came back positive and we were told to keep her on her antibiotics and get another sample form her when they had been finished. Rebecca is due to go into hospital at the beginning of December for her PH Test.
Rebecca was taking her medicine very well to get her unblocked but then she became unwell with a high temperature and another nasty cough which was making her sick, it was impossible to get her to take her medicine let alone keep it down her if she did, she wasn't sleeping and was waking nearly every hour because of hjer temperature - it seems that she had caught flu on top of everything else. Because Rebecca wasn't doing very well by Monday I rang the Mr Powis' secretary to see if we could see him sooner and she got us in to see him that afternoon, as soon as he saw her he said she looked 'fluey' probably due to her being so bunged up etc she was prone to getting poorly so he changed her medication to something stronger for her constipation so that we could get her bodily functions working properly again, he also prescribed suppositries so that her constipation could ba attacked form both ends so to speak.....we need to get her better ready for her PH Test which is to be done on 9th December.
Rebecca has been back at the doctors and it looks like this medication is working, she is still bunged up but doesn't seem as bad and is even starting to eat again and telling us she is hungry so that is a good sign.
Friday 9th December 2005 Rebecca went into hospital for her PH Test, they took her down to Theatre and put a probe into her intestines to check the amount of acid coming back up, this tube ran from her nose into her intestines. While she was in theatre Mr Powis looked at her intestines, stomach wall, bladder and bowel. The results of these examinations showed there were no signs of scaring or burning, that means that any acid that is coming back up is not causing her any long term damage - probably due to her medication (Ranitidine). Rebecca's valve that is supposed to be tightly shut to stop anyting coming back up is lax (slightly open) and they found that she has a Hernia (a piece of muscle) pushing it's way up through the hole, Mr Powis said that these can be quite common and would only do something about it if that was causing her more problems with her Reflux, he took a biospy from her stomach. Mr Powis was concerned that her bladder was full but couldn't find a reason why it was but he took a biopsy to check it out, her bowel was a different story, it still wasn't empty, Mr Powis found very hard rabbit like droppings, he cleared away as much as he could and found them to be quite bloody due to them being ulcerous - no wonder Rebecca complained she was sore....anyway Mr Powis took a biopsy of her bowel too. We are going to continue with her medication to tackle this problem and see how we go from there.
The probe for the PH Test was kept in her intestines for 24 hours and I had to write down everything she ate and drank, what time it was, what position she was in etc so they can compare the notes to the readings from the PH Test machine....we did notice that her PH Levels were a little acidic all the time and they went quite low form time to time, we will have to wait for her results to see what happens next, Rebecca will stay on her medication for Reflux (which Mr Powis had put up to 2.5ml last time we saw him) until we go and see the consultant for the results of all her test.
The results of her tests were ok and she was taken off her medication for her Reflux. We don't know why she suffers from her symptoms but maybe they will go in time.
2006 saw Rebecca back and forwards to see the consultant and the doctor as she was having major problems with with her bladder and her bowel. Rebecca was constipated quite a lot and she doesn't go for a wee unless you tell her to! We had a couple of major bouts of constipation and in September we had a really bad one and eventually she was so bunged up we had to take her to A & E as she was bringing it up the other way....it was awful. After more x-rays etc they decided to send her up to the ward to have an enema to help her, which was an awful experience in itself , but it worked and we were able to get her better and off to nursery (she was supposed to start in January but she was too poorly).
As soon as Rebecca started nursery she got poorly....and is poorly every other week alomst - always the same syptoms, extremely high temperature, cough, sore throat and ear infection. It doesn't matter what the other children get she gets the same thing over and over, we are now quite concerned about it as we thought she would have improved by now but she isn't - it doesn't matter if she is at nursery or if she is at a family gathering or party, she is always pooorly afterwards.
It is now April 2007 and we are going to have Rebecca's immune system checked out in May, hopefully when we see Mr Powis he will be able to sort it, if not we will have to be referred by the doctor. Fingers crossed Rebecca's medicine is keeping her bowel moving but we will discuss this again with Mr Powis as well as her Bladder problem.
