Monday, February 14, 2005
First Update
Hannah is nearly six months old and weighs just over 15 pounds. She looks great and is a typical bouncing, wiggling baby. She is pink and chubby and looks the picture of health. It is hard to believe when you look at her that she has such a serious disease. Thank God for the fantastic people at Birmingham Children's Hospital Liver Unit. It is hard not to be obsessive about her health, particularly as all the good work could be undone by a few bouts of cholangitis (infection of the bile ducts in the liver caused by bacteria from the intestine - a common complication of the kasai and one that causes liver damage very quickly). However we try to take a day at a time and enjoy this time when she is in such good health.
Saturday, February 12, 2005
The first six months
Before birth and the first few days
In August 2004, my second daughter Hannah was born, after an uneventful pregnancy. A scan for growth at 32 weeks ended up being very detailed and showed a baby already weighing around 5 lbs, who had no detectable anomalies. Hannah’s birth was very quick, and fairly traumatic, but normal. (link to blogpost about evil midwife). She was a healthy 8 lb 4.5 oz, and by my calculation around 4 days overdue. Hannah passed some meconium, which was a normal blackish green colour, immediately after birth and several times afterwards. She slept continuously for the first twelve hours of her life, having to be roused for all her checks. Unfortunately I was unable to do the same. Hannah showed no interest in feeding until I initiated skin to skin contact. Following the sleepy period, she was awake continuously for the next 24 hours (apart from a brief nap initiated by the car journey home), and screaming unless she was snuggled in someone arms, or feeding.
I was keen to get out of the hospital, for a number of reasons; the main ones being that I missed Caitlin so much and that I was desperate for a bath (after Caitlin was born I had a nasty infection and feel there was a link to the hospital baths). Hannah had a general check up, and was pronounced perfect. She also passed her hearing test, and had a slightly shallow hip on the hip scan. We knew that would have to be followed up anyhow as we have a family history of CDH (link).
We had to wait for Hannah to have a wee before we could go, and I put cotton wool in her nappy so I could be sure (hard to tell with disposables and little newborn wees). When she eventually produced, I noticed the cotton wool was yellowish. So, when Hannah was around 17 hours old, we went home. Then followed the sleepless night from hell, with the aforementioned baby who would not sleep and HATED the crib. At this point I had slept around 3 hours in the last 48, and had given birth to boot. Insanity was beckoning – then we discovered swaddling. Hannah was a big baby, and I am only little! Obviously she had become very used to her confined space, and was much happier wrapped tightly in her blanket.
The next day we were visited by the community midwife – not Marie, who had looked after me during my pregnancy, but a stand-in. She made no comment, but when she left the notes she had written stated “Hannah has mild facial jaundice”. Around this time she had her first non-meconium bowel movement; it was a pale yellow colour.
Over the next week we were visited a couple of times by Marie, my usual community midwife. Hannah continued to be jaundiced, but not terribly so. Otherwise she was fairly settled and feeding well. Marie asked me on each visit about the colour of Hannah’s poo, to which my answer was that it was yellow.
Aged 10 days to 4 weeks
The usual handover between the community midwife and the health visitor happens when the baby is 10 days old and the midwife makes her final visit. It is usual then for the health visitor to make one or two visits, then you have a weekly baby clinic facility where you can have your child weighed and speak to a health visitor if you wish. The next official check-up is then at 6-8 weeks.
So, Hannah is 10 days old and still jaundiced. Not a problem, as healthy full-term babies are often jaundiced for up to two weeks. When Marie visited, she explained that she would need to return when Hannah was two weeks old to check the jaundice had cleared, otherwise Hannah would need to be sent for a blood test.
My baby might need a blood test – scary stuff! Fortunately at the two week visit Hannah did not appear jaundiced, and Marie discharged us to the health visitor, while expressing surprise that the HV had not contacted me to arrange an appointment.
The health visitor rang and arranged an appointment for the following Tuesday. Over the weekend Andy and I noticed that Hannah was still looking jaundiced. From what Marie had said we were concerned that this could mean a problem. However, Hannah was well and we felt happy that it could wait until the Tuesday appointment…..when the health visitor did not turn up. Of course I rang, and left a message, but no-one got back to me until the HV arrived unannounced on the Thursday afternoon, fortunately 5 mins after we had arrived home. I immediately raised my concerns with her regarding Hannah’s continued jaundice. She was at best dismissive, and at my insistence said she would contact the GP to seek his opinion, and call me back if I needed to take action. It is also worth noting that at this visit, she observed Hannah’s wee (bright yellow) and poo (pastel yellow), and made no comment other than “Oh, I see her wee is quite yellow.” At this point Hannah is three weeks old, and I would like to mention this (link) UK protocol, which clearly Marie was aware of…..
The days passed. Hannah got yellower. Her wee got darker. There was no word from the health visitor. Aged 4 weeks, I took her to the baby clinic, and demanded that she be sent for the blood test. The health visitor eventually agreed to ring the paediatric assessment unit at the hospital to ask their opinion. They wanted the blood test done ASAP. I said I would take her the next day.
Thinking they would draw some blood and send us on our way, I took Caitlin with me. Actually, they also wanted Hannah to wee in a pot. It is not easy to try and get a four week old baby to wee in a pot while you also supervise a two year old in a room full of medical supplies, especially when the pot only holds about 4 teaspoons. The first wee came out while the doctor was examining her tummy. The second wee came out in the pot, but so did a poo…no good. The third wee…success. Well, there was some in the pot, and lots on my trousers. Only three hours to get to that point, and I opted to go home before the blood results.
The blood test was horrible too. Her blood was squeezed out a drop at a time from her hand into seemingly hundreds of little tiny tubes, while she screamed constantly. Not really what I was expecting. Her little hands were bruised for weeks.
They also explained to me what might be causing Hannah’s jaundice. I remember them mentioning thyroid problems and breastmilk jaundice….but not liver disease.
That afternoon, I had a very non-committal call from the hospital. Hannah’s blood tests had shown that she did not have breastmilk jaundice, and that she needed some more blood tests to investigate further. Being Friday, I should not worry over the weekend, particularly as Hannah was well in herself, but I should bring her back to the hospital at 9 am on Monday morning.
When Monday arrived, Hannah and I set off for the hospital. The doctor sat us down and explained that Hannah had a high conjugated bilirubin. This indicated that her jaundice was due to a blockage of bile from her liver. She needed to have an ultrasound to find out what was causing the blockage.
The first attempt at the ultrasound was a miserable failure as Hannah simply screamed and thrashed around as she was hungry. We took a break and I went off to feed her. The second attempt was more successful, although had I been more experienced it would have raised a few red flags that the ultrasound was being done by a consultant radiologist rather than a radiography technician. He told me immediately that he could see a problem; Hannah had a cyst on her bile duct. He told me this was “rare, but well documented”, and we were dispatched back to the ward with a brown envelope.
There, the doctor told me that Hannah would require surgery for the cyst, and this would be done at Birmingham Children’s Hospital. This is our local children’s hospital, so it seemed routine to me that a four week old baby requiring surgery would be referred there. I didn’t realise at the time that she was actually being referred to one of only three paediatric liver centres in the UK. He also expressed his relief that Hannah had the cyst. “We were all very worried that it was something much worse, where the bile duct is missing or damaged….that would have been a million times worse.” I obtained my first in my collection of doctors’ drawings in biro of the liver and biliary system.
Hannah would need to stay in hospital until Birmingham made a decision on when they would do the surgery; however, we would be allowed to go home overnight. I can remember phoning my mum from outside the hospital and being so relieved that Hannah wouldn’t be “one of those little yellow children you see on the news who need a liver transplant”.
Andy, meanwhile, had been researching online furiously at work, and provided me with a medical term (the doctors at our local hospital don’t seem to like doing this) in the form of choledochal cyst (link). He brought a number of printouts home, and we read through them that evening after we were allowed home.
We found that choledochal cyst was a very rare congenital abnormality, with figures of around 1 in 100,000 births. However, of all the things it could have been, it was pretty OK. Hannah would be ‘fixed’ after her surgery, which would involve replacing the damaged section of bile duct with part of her own intestine. There was a small risk of complications developing later on, but in most cases, the surgery would completely fix the problem.
After another two days of sitting around the hospital (no further tests) they decided Hannah could go home. This was a horrible time because although I knew that the next step would be to go to Birmingham, I had no information on when that would be happening. The second day we were sitting in the hospital a paramedic asked me if I was waiting for an ambulance to Birmingham. “I don’t know!” was my answer. We were sent home on the Wednesday evening without Hannah’s medicines, because the pharmacy couldn’t get them organised. It was the next evening before they were available and Andy went up to collect them. I was pretty shocked to see three large bags, but fortunately most of the space was taken up with the Vitamin K supplement, which was in little glass vials, with a tiny amount in each. She was prescribed Vitamins A, D, E and K, and ursodeoxycholic acid.
I didn’t expect to have so much learning to do with Hannah. I knew how to look after a baby. I’d done it before without major mishap. Here she was, five weeks old, and I’d already had to deal with blood tests, ultrasound, weeing in pots, and facing up to an operation. Now I had to learn giving your tiny baby half a dozen different medicines with a syringe. You don’t find these things in the baby books.
So, we tried to stay calm and wait for the call from Birmingham, not knowing if it would be that week or in a few months. There wasn’t long to wait. The following Monday I had a call from the liver unit admissions secretary, saying they would like to admit Hannah that coming Sunday for tests and possible surgery on the Tuesday. I said that the local hospital had given us very minimal information, and the secretary said that one of the surgeons would call me back and give me some more information.
I learnt that Hannah would be in hospital for 7-10 days, and that the surgery needed to be done soon to minimise the risk of complications. I also got given some actual medical names for things, which was a first.
In patient at Birmingham Children’s Hospital
This section is still in progress
Post Kasai – the first three months
This section is still in progress
In August 2004, my second daughter Hannah was born, after an uneventful pregnancy. A scan for growth at 32 weeks ended up being very detailed and showed a baby already weighing around 5 lbs, who had no detectable anomalies. Hannah’s birth was very quick, and fairly traumatic, but normal. (link to blogpost about evil midwife). She was a healthy 8 lb 4.5 oz, and by my calculation around 4 days overdue. Hannah passed some meconium, which was a normal blackish green colour, immediately after birth and several times afterwards. She slept continuously for the first twelve hours of her life, having to be roused for all her checks. Unfortunately I was unable to do the same. Hannah showed no interest in feeding until I initiated skin to skin contact. Following the sleepy period, she was awake continuously for the next 24 hours (apart from a brief nap initiated by the car journey home), and screaming unless she was snuggled in someone arms, or feeding.
I was keen to get out of the hospital, for a number of reasons; the main ones being that I missed Caitlin so much and that I was desperate for a bath (after Caitlin was born I had a nasty infection and feel there was a link to the hospital baths). Hannah had a general check up, and was pronounced perfect. She also passed her hearing test, and had a slightly shallow hip on the hip scan. We knew that would have to be followed up anyhow as we have a family history of CDH (link).
We had to wait for Hannah to have a wee before we could go, and I put cotton wool in her nappy so I could be sure (hard to tell with disposables and little newborn wees). When she eventually produced, I noticed the cotton wool was yellowish. So, when Hannah was around 17 hours old, we went home. Then followed the sleepless night from hell, with the aforementioned baby who would not sleep and HATED the crib. At this point I had slept around 3 hours in the last 48, and had given birth to boot. Insanity was beckoning – then we discovered swaddling. Hannah was a big baby, and I am only little! Obviously she had become very used to her confined space, and was much happier wrapped tightly in her blanket.
The next day we were visited by the community midwife – not Marie, who had looked after me during my pregnancy, but a stand-in. She made no comment, but when she left the notes she had written stated “Hannah has mild facial jaundice”. Around this time she had her first non-meconium bowel movement; it was a pale yellow colour.
Over the next week we were visited a couple of times by Marie, my usual community midwife. Hannah continued to be jaundiced, but not terribly so. Otherwise she was fairly settled and feeding well. Marie asked me on each visit about the colour of Hannah’s poo, to which my answer was that it was yellow.
Aged 10 days to 4 weeks
The usual handover between the community midwife and the health visitor happens when the baby is 10 days old and the midwife makes her final visit. It is usual then for the health visitor to make one or two visits, then you have a weekly baby clinic facility where you can have your child weighed and speak to a health visitor if you wish. The next official check-up is then at 6-8 weeks.
So, Hannah is 10 days old and still jaundiced. Not a problem, as healthy full-term babies are often jaundiced for up to two weeks. When Marie visited, she explained that she would need to return when Hannah was two weeks old to check the jaundice had cleared, otherwise Hannah would need to be sent for a blood test.
My baby might need a blood test – scary stuff! Fortunately at the two week visit Hannah did not appear jaundiced, and Marie discharged us to the health visitor, while expressing surprise that the HV had not contacted me to arrange an appointment.
The health visitor rang and arranged an appointment for the following Tuesday. Over the weekend Andy and I noticed that Hannah was still looking jaundiced. From what Marie had said we were concerned that this could mean a problem. However, Hannah was well and we felt happy that it could wait until the Tuesday appointment…..when the health visitor did not turn up. Of course I rang, and left a message, but no-one got back to me until the HV arrived unannounced on the Thursday afternoon, fortunately 5 mins after we had arrived home. I immediately raised my concerns with her regarding Hannah’s continued jaundice. She was at best dismissive, and at my insistence said she would contact the GP to seek his opinion, and call me back if I needed to take action. It is also worth noting that at this visit, she observed Hannah’s wee (bright yellow) and poo (pastel yellow), and made no comment other than “Oh, I see her wee is quite yellow.” At this point Hannah is three weeks old, and I would like to mention this (link) UK protocol, which clearly Marie was aware of…..
The days passed. Hannah got yellower. Her wee got darker. There was no word from the health visitor. Aged 4 weeks, I took her to the baby clinic, and demanded that she be sent for the blood test. The health visitor eventually agreed to ring the paediatric assessment unit at the hospital to ask their opinion. They wanted the blood test done ASAP. I said I would take her the next day.
Thinking they would draw some blood and send us on our way, I took Caitlin with me. Actually, they also wanted Hannah to wee in a pot. It is not easy to try and get a four week old baby to wee in a pot while you also supervise a two year old in a room full of medical supplies, especially when the pot only holds about 4 teaspoons. The first wee came out while the doctor was examining her tummy. The second wee came out in the pot, but so did a poo…no good. The third wee…success. Well, there was some in the pot, and lots on my trousers. Only three hours to get to that point, and I opted to go home before the blood results.
The blood test was horrible too. Her blood was squeezed out a drop at a time from her hand into seemingly hundreds of little tiny tubes, while she screamed constantly. Not really what I was expecting. Her little hands were bruised for weeks.
They also explained to me what might be causing Hannah’s jaundice. I remember them mentioning thyroid problems and breastmilk jaundice….but not liver disease.
That afternoon, I had a very non-committal call from the hospital. Hannah’s blood tests had shown that she did not have breastmilk jaundice, and that she needed some more blood tests to investigate further. Being Friday, I should not worry over the weekend, particularly as Hannah was well in herself, but I should bring her back to the hospital at 9 am on Monday morning.
When Monday arrived, Hannah and I set off for the hospital. The doctor sat us down and explained that Hannah had a high conjugated bilirubin. This indicated that her jaundice was due to a blockage of bile from her liver. She needed to have an ultrasound to find out what was causing the blockage.
The first attempt at the ultrasound was a miserable failure as Hannah simply screamed and thrashed around as she was hungry. We took a break and I went off to feed her. The second attempt was more successful, although had I been more experienced it would have raised a few red flags that the ultrasound was being done by a consultant radiologist rather than a radiography technician. He told me immediately that he could see a problem; Hannah had a cyst on her bile duct. He told me this was “rare, but well documented”, and we were dispatched back to the ward with a brown envelope.
There, the doctor told me that Hannah would require surgery for the cyst, and this would be done at Birmingham Children’s Hospital. This is our local children’s hospital, so it seemed routine to me that a four week old baby requiring surgery would be referred there. I didn’t realise at the time that she was actually being referred to one of only three paediatric liver centres in the UK. He also expressed his relief that Hannah had the cyst. “We were all very worried that it was something much worse, where the bile duct is missing or damaged….that would have been a million times worse.” I obtained my first in my collection of doctors’ drawings in biro of the liver and biliary system.
Hannah would need to stay in hospital until Birmingham made a decision on when they would do the surgery; however, we would be allowed to go home overnight. I can remember phoning my mum from outside the hospital and being so relieved that Hannah wouldn’t be “one of those little yellow children you see on the news who need a liver transplant”.
Andy, meanwhile, had been researching online furiously at work, and provided me with a medical term (the doctors at our local hospital don’t seem to like doing this) in the form of choledochal cyst (link). He brought a number of printouts home, and we read through them that evening after we were allowed home.
We found that choledochal cyst was a very rare congenital abnormality, with figures of around 1 in 100,000 births. However, of all the things it could have been, it was pretty OK. Hannah would be ‘fixed’ after her surgery, which would involve replacing the damaged section of bile duct with part of her own intestine. There was a small risk of complications developing later on, but in most cases, the surgery would completely fix the problem.
After another two days of sitting around the hospital (no further tests) they decided Hannah could go home. This was a horrible time because although I knew that the next step would be to go to Birmingham, I had no information on when that would be happening. The second day we were sitting in the hospital a paramedic asked me if I was waiting for an ambulance to Birmingham. “I don’t know!” was my answer. We were sent home on the Wednesday evening without Hannah’s medicines, because the pharmacy couldn’t get them organised. It was the next evening before they were available and Andy went up to collect them. I was pretty shocked to see three large bags, but fortunately most of the space was taken up with the Vitamin K supplement, which was in little glass vials, with a tiny amount in each. She was prescribed Vitamins A, D, E and K, and ursodeoxycholic acid.
I didn’t expect to have so much learning to do with Hannah. I knew how to look after a baby. I’d done it before without major mishap. Here she was, five weeks old, and I’d already had to deal with blood tests, ultrasound, weeing in pots, and facing up to an operation. Now I had to learn giving your tiny baby half a dozen different medicines with a syringe. You don’t find these things in the baby books.
So, we tried to stay calm and wait for the call from Birmingham, not knowing if it would be that week or in a few months. There wasn’t long to wait. The following Monday I had a call from the liver unit admissions secretary, saying they would like to admit Hannah that coming Sunday for tests and possible surgery on the Tuesday. I said that the local hospital had given us very minimal information, and the secretary said that one of the surgeons would call me back and give me some more information.
I learnt that Hannah would be in hospital for 7-10 days, and that the surgery needed to be done soon to minimise the risk of complications. I also got given some actual medical names for things, which was a first.
In patient at Birmingham Children’s Hospital
This section is still in progress
Post Kasai – the first three months
This section is still in progress
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