Tag Archives: babies

Krabbe: The Disease That Needs More Awareness

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I had not heard of Krabbe disease until 2011, when a relative was diagnosed with it. Krabbe is also called Globoid cell leukodystrophy; Galactosylcerebrosidase deficiency; Galactosylceramidase deficiency. It is a rare genetic disorder of the nervous system and is a type of leukodystrophy. It is named after the Danish neurologist Knud Haraldsen Krabbe who discovered it.

Krabbe disease is caused by a defect in the GALC gene. People with this gene defect don’t make enough of a substance called galactocerebroside beta-galactosidase (galactosylceramidase).

This is needed by the body to make myelin, the material that surrounds and protects nerve fibers. Myelin breaks down without it, brain cells die, and nerves in the brain and other body areas do not work properly.

There are two forms of Krabbe disease.

  • Early-onset Krabbe disease appears in the first months of life.
  • Late-onset Krabbe disease begins in late childhood or early adolescence.

Krabbe disease is inherited, which means that it runs in families. To get this disease, each of your parents must pass you a copy of the faulty GALC gene.

This condition is very rare, Affecting 1 in 100,000 births.

Symptoms

  • Changing muscle tone from floppy to rigid.
  • Hearing loss that leads to deafness
  • Feeding difficulties
  • Irritability and sensitivity to loud sounds
  • Severe seizures
  • Unexplained fevers
  • Vision loss that leads to blindness
  • Vomiting

The condition is often misdiagnosed as cerebral palsy.

There is no specific treatment for Krabbe disease.It is possible to have a bone marrow transplant in the early stages of the disease, but this treatment has risks.The outcome of Krabbe is usually not good. On average, infants with Krabbe die before age 2. People who develop the disease at a later age have survived into adulthood with nervous system disease.

A blood test can be done to see if you carry the gene for Krabbe disease and prenatal tests can be done to screen a developing baby for this condition.

http://www.savebabiesuk.org/

United Leukodystrophy Foundation — www.ulf.org

http://www.krabbes.com/

huntershope

 

BELLE CROWNED BEST CELEBRITY BABY NAME OF 2011

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BELLE CROWNED BEST CELEBRITY BABY NAME OF 2011

 

Belle, daughter of Bounty’s ‘Celebrity Mum of the Year 2010’ winner Holly Willoughby, has won her first crown at nine months old, as she is awarded the accolade of having the ‘best celebrity baby name of the year’.

 

The moniker topped the poll to find mum’s favourite celebrity baby name, beating off strong competition from other celeb tots, including Harper-Seven (Victoria Beckham), Madison (Mel B) and Delilah (Kimberley Stewart).

 

The name Belle, which means ‘beautiful’ in French, is also one of Disney’s best-loved characters from the story ‘Beauty and the Beast’ and mums love the name because it is ‘pretty, girly and elegant.’

 

Second favourite is Sophia, which was the 28th most popular baby name of 2010 and is the name given to the daughter of footballer Peter Crouch and model Abbey Clancy.  In third place is pop/rock singer Pink’s tot Willow Sage.

 

The Beckham’s Harper-Seven narrowly missed the top three, coming in fourth place.

 

For the boys, Flynn, son of ‘Pirates of the Caribbean’ star Orlando Bloom and Miranda Kerr, came top of the poll.  Already a super-cute baby, he is sure to follow in his father’s footsteps and ‘bloom’ into a handsome young man. Mums commented that the name is both ‘cute for a baby, as well as romantic and dashing for when he grows up.’

 

Former-Baby Spice Emma Bunton’s son Tate, is the second most popular boys’ celebrity baby name and completing the top three is Harry – son of model Danielle Lloyd.

 

In total, over 101,000 votes were cast on the online poll, which was compiled by parenting club Bounty and sponsored by www.HomeAway.co.uk, the UK’s largest holiday rentals website.

 

Lisa Penney, spokesmum for bounty.com said: “We all love to know what celebrities call their babies (even if we don’t like to admit it!) and our records show that what celebrity parents call their children can help to increase the popularity of the name.

 

“The top ranking names like Belle, Sophia, Madison and Flynn are the names which our mums can more easily identify with. The less popular, more unusual names such as Kahekili (Evangeline Lily) or Bear Blu (Alicia Silverstone) may not seem out of place in the celebrity kindergarten next to the likes of Suri, Apple, Zuma Nesta and Princess Tiaamii, but these names are certainly not the norm in the average school playground.”

 

Other celebrity named babies that proved popular this year include Hero (Myleene Class) and Lyra (Sophie Dahl).

 

Towards the bottom of the top 20 and demonstrating mum’s least favourite celebrity boys and girls names of 2011 are Mariah Carey’s Moroccan and Jessica Alba’s daughter Haven.

 

  1. Belle
  2. Sophia
  3. Willow
  4. Harper-Seven
  5. Madison
  6. Delilah
  7. Flynn
  8. Hero
  9. Lyra
  10. Tate
  11. Monroe
  12. Harry
  13. Polly
  14. Bear Blu
  15. Indio
  16. Kahekili
  17. Bingham
  18. Arthur
  19. Haven
  20. Moroccan

 

Wendy's baby diary – 7 months

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Time to cut off the milk supply?

Signs indicating it’s time to stop breastfeeding:

1) Baby’s got more teeth than you’ve got nipples

2) Baby tugs down your top

3) Baby tries to suck other parts of you, in the belief that mummy is made of milk

4) Friends and relatives say ‘You’re not still breastfeeding are you?’

5) Bitty

I think it’s time to hang up the Closed sign on the milk bar. Baby Dillon’s got six teeth. He’s eating solids (toast, blueberries). He’s rolling around the floor and knocking stuff off the TV stand. He’s sleeping through the night in his own bed, in his own room. He’s racing around the
kitchen in his baby walker (able to reverse and manoeuvre past the clothes
horse). What happened to my newborn? Before I know it he’ll be scaling Everest and
I’ll be crying into his baby clothes saying “you used to be this big”.

Baby Rash

Dillon was ill with a rash which turned out to be a viral
infection. It’s so scary to see a bright red rash on his trunk. The instant
concern is, is it meningitis? do the tumbler test. He recovered in a couple of
days, so we took him to visit my mum with a new travel cot, which of course he
didn’t sleep in, and when he doesn’t get any sleep nor do we. The travel cot
also functions as a portable prison ahem playpen so it will get used one way or
another.

Festive

I had thought Dillon was too young to appreciate Halloween
or Guy Fawkes but nearer the time I realised we could enjoy these special
occasions and get some memorable photos. My friend carved him a pumpkin lantern
and Dillon wore a monkey outfit for Halloween and went to a themed baby sensory
class and fancy dress day at his nursery where all the staff wore pyjamas.
Cute. Now I’m looking forward to his first Christmas. He’ll be dressed as baby
Santa with a red hat. The dog will have on a pair of reindeer antlers. And wearing
a knitted Christmas pullover will be Colin Firth. Who can stuff my turkey anyday.

Swimming

Baby swimming lessons have finished, it was a bit of a wash
out with nearly half the lessons cancelled or postponed so we didn’t learn a
lot. Dillon got used to being carried around in water. We might try again in the
New Year so that one day we can have our own Nevermind album cover.

Juggling

Can I manage baby Dillon and a Masters degree and go back to
work? I’m unsure. But you don’t know until you try. Some people thought I was
mad to be starting a MA when I was pregnant. It has been tough and I wouldn’t
still be on the course without support from certain people. Getting out of the
house to go to class has been positive for me. So many mums work full time then
it’s a shock to the system to be at home all day for 9 months to a year. So commuting
into London one or two days a week gives me a bit of normality. I think every
mum, however much she loves her kids, needs an occasional break.

So when I’m worried about running out of nursing pads and number
3 baby formula I can take my mind off it with French and Greek philosophers,
the classical dramatic paradigm and bright young things running about campus.

The main problem I have is burning the midnight oil as I can’t
concentrate until he’s gone to bed and by then I’m hankering for some medicine
(see previous baby diary http://frostmagazine.com/2011/10/wendys-baby-diary-six-months-guilt-isolation-and-men/), go to bed at 2am and get woken by Babezilla at 6.45am.

Congratulations

Lots of happy baby news – congratulations to our friends
Nathan and Bonnie on the birth of baby Samuel, Kevin and Louise who had baby
Aidan and my brother Terry and his wife Ola who had baby Matthew. And to our
friends L&M who are expecting. First timers – you don’t know what you’re in
for. Second timers – memory lapse?

Until next time

I think my get up and go, got up and went!

(c) Wendy Thomson 2011

Wendy Thomson is the editor of www.femalearts.com an online publication
which promotes women in the arts and in business.

Wendy's baby diary – cheeky monkey

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Baby Diary – 31 weeks

Ill

I started out with the intention to keep this baby column
weekly but it’s been nearly a month since my last baby update. There are a
couple of reasons and one is that Dillon has been ill. He got an infected toe
(we’re not sure how) and needed antibiotics for a week, this was followed by a
temperature for a couple of days and he’s had a cough for nearly a month. It is
scary and a panic when I hear any sniffle. Keep well baby D!

Controlled Crying

Dillon is nearly 7 months old and life is starting, just
starting to get easier. Bless his heart, Dillon has been sleeping through the
night for the last few weeks.  To get
there we had to go down the ‘controlled crying’ route. At first I didn’t want
to. We did the pick up, put down approach which is comfort the baby then leave him,
repeat as necessary, but when repeat is many times throughout the night it got
too much for both of us (stamina, exhaustion, feeding in desperation).

So what is controlled crying? Basically you leave your baby
to cry themselves to sleep. It’s not in a horrible, ignore the baby kind of
way, it’s in a loving, have I checked the baby and after feeding, winding,
changing, checking if teething, temperature, breathing is everything else ok
and telling him you love him and putting the lights out, you let him cry his
little heart out until he falls asleep. Yes it feels heartless and horrible and
wrong. But our little boy is 80 percentile he’s not going to waste away from
lack of milk and booby at night he can definitely sleep without it. After some
reassurance from my friend, we let Dillon cry himself to sleep and he cried for
about 20 mins. The next night between 10 and 15 mins. That was it. Joy!  For 10 hours the baby is asleep and I am free.
Freedom!

Nursery

Dillon has started at nursery two days a week so that I can
attend Uni two days a week. Oh the guilt of leaving him with someone else. But
the staff are really nice, the nursery has a good vibe about it and it does me
some good to be in an intellectual environment twice a week. I worry about him,
but he’s a sociable, loving baby, I think he’s happy there.  At six months old he’s also the youngest baby at
the nursery as most people go back to work after maternity leave of 9 months to
one year, another reason to feel guilty. But he seems to be getting a lot of
attention from the staff as the youngest, neediest baby which makes me feel
better. He also hasn’t formed that strong attachment to me yet, so when I say
bye bye, he doesn’t notice me leave, he’s busy eyeing up the toys and the other
babies.

Easier for Dad to
Leave the House

Since he’s working full time it’s easier for Dillon’s dad to
get out of the house 5 days a week. Sometimes I’ve been a little jealous that
he gets to leave, in a thoughtless grass is always greener way. Because I know how
well tended the lawn is on my side of the fence. And I’m not talking lady
garden. I’m happier being at home with Dillon. The gig that Dad went to which
turned into a 24 hour absence felt a bit much, especially when it looked set to
repeat the next weekend (but it’s not happening now). I appreciate that we both
need a break and we take it in turns to babysit.  Yes I’ve missed a lot of theatre before and
after Dillon was born, but I’ve read a lot of books, watched a lot of TV,
films, listened to radio, even got to the cinema (thanks to the Baby Scream
club), met up with other mums at Baby Sensory classes and my NCT group and with
my mum friends, we’ve taken Dillon to baby swimming classes, even church once a
month. The isolation I had felt is diminishing – just got to get out with the
baby!

Pushchairs

Dillon’s travel system has been good in a lot of ways but
boy is his car seat heavy and the whole thing is bulky, so we’re looking into a
lightweight pushchair to make it easier when dropping him off at nursery. I just
don’t understand why the majority of pushchairs are designed so that the baby
faces forwards (not towards mum).  I only
see problems with it, because to check on your child you have to stop, walk to the
front, deal with your baby then return to the back. Anytime your baby cries,
needs a drink or food, has a runny nose, their clothing needs adjusting you’ve
got to stop and go to the front of the pushchair (and when it’s crowded on the
pavement annoy all the pedestrians behind you).

More (inexpensive) rear facing pushchairs please!

Happy Halloween

© Wendy Thomson 2011

Wendy Thomson is the editor of www.femalearts.com an online publication
which promotes women in the arts and in business.

Recession Delays Women Having Babies

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The recession is having a direct effect on birth rates, with one in four women being forced to delay or reconsider having a baby, according to the 2011 Red National Fertility Report.

The results, published in Red’s October issue out on Tuesday 6th September 2011, shows the effect the recession has had on women trying for a baby – from how much they would be prepared to pay in order to conceive, to postponing motherhood due to redundancy and the rising costs of living. The report surveyed over 2,500 Red Magazine readers aged 30-45.

Key findings include:

· The recession has resulted in a 25% drop in babies tried for, with 10% of women saying the recession had made them postpone trying for a baby, and 15% saying they’d decided not to try at all.

· Baby prices have dropped more than house prices – with the average amount women would be prepared to spend to conceive dropping from £15,000 to £12,000 – a 20% drop in just 12 months. * The average house price is down 2.65% from July 2010 to £163.981 – Halifax House Price Index.

· The percentage of women who would be prepared to spend £50,000 to guarantee them a baby has dropped even more dramatically from 10% to 6% – a 40% drop over the same period.

· Following increased financial pressure on the NHS, when it comes to offering free IVF, 62% of women don’t think it should be available for anyone who wants it – up 17% from 2007 (45%). This suggests that when funds are tight, fewer women perceive having a baby as a right for all.

· Due to lack of IVF on the NHS, 61% have paid for IVF privately, with only one in five getting all their treatment for free.

Sam Baker, Editor-in-chief of Red Magazine, said of the findings: “This report provides an incredible in-depth view on the effect the recession has had on women’s baby plans.
The comparable figures show that the last year has hit women and their families hard, with many having to postpone or reconsider trying for a baby.”

Brigid Moss, Red magazine’s Health Director added: “Fertility treatment can be expensive, and this report shows that fewer people have been able to afford it, while the NHS provision for fertility treatment remains a postcode lottery. The report shows that having problems trying to conceive and treatment is also stressful, too. Both of these factors only add to the stress of someone who’s having problems trying to conceive.”

THE REPORT IN FULL:

MONEY

· The recession has resulted in a 25% drop in babies tried for, with 10% of women saying the recession had made them postpone trying for a baby, and 15% saying they’d decided not to try at all.

· Baby prices have dropped more than house prices – with the average amount women would be prepared to conceive dropping from £15,000 to £12,000 – a 20% drop in just 12 months.

· The number of women prepared to spend over £50,000 to guarantee them a baby has dropped even more dramatically from 10% to 6 % – a 40% drop over the same period.

· Due to lack of IVF on the NHS, 61% have paid for IVF privately, with only one in five getting all their treatment for free.

· A staggering 100% of women surveyed would, or have, cut back on school fees to pay for fertility treatment. 94% of women say they would cut back on all aspects of their lives to pay for fertility treatment if they needed it (includes holidays, eating out, pensions, savings, health insurance, clothes and selling possessions).

· Most women paying for fertility treatment have said that the money came from savings (88%), but 17% received a gift or loan from their family, 13% took on extra work and 13% put fertility costs on their credit card.

· 23% would consider moving / down-grading their house to get free NHS IVF provision to help them conceive.

· 17% of women who need fertility treatment have been prevented because of the costs, and 12% said the recession has directly prevented them from having treatment or more treatment.

GOVERNMENT POLICY / NHS

· Following increased financial pressure on the NHS, when it comes to offering free IVF, 62% of women don’t think it should be available for anyone who wants it – this is up 17% from 2007 (45%). This suggests that when funds are tight, fewer women perceive having a baby as a right for all

· 74% of women believe the government should ensure women are provided with three free cycles of IVF on the NHS.

· 95% think it’s unfair that there are different NHS IVF provisions depending on where you live.

· Nearly 60% believe that women should be given IVF on the NHS even if they have a child with their current partner, rising to 90% if they have a child from a previous relationship.

· BUT 62% don’t think that IVF should be available on the NHS to anyone who wants it.

SUCCESS CONCEIVING

· 23% of the women asked have had problems conceiving.

· For those who have had IVF treatment, 38% have only had it once, and 10% have had it more than five times.

· When it comes to the success of IVF, 45% got pregnant and had a baby, 31% didn’t conceive and 5% conceived naturally.

· 18% would consider going abroad for treatment if provisions were not available at home.

STRESS

· Fertility treatment is more stressful than the recession – 59% found it more stressful than dealing with financial concerns.

· 40% find the process more distressing than the ending of a relationship.

· Three in four (71%) found it more stressful than moving house.

· Nearly two thirds (62%) found fertility treatment more stressful than being made redundant.

· A third of women (36%) said that fertility problems made them depressed with 2% even signing off work due to stress / mental health problems.

· Nearly half of women(47%) said their husbands found it hard to cope when they were not getting pregnant.

EGG FREEZING

· 27% of women have considered freezing their eggs for the future.

Wendy's Baby Diary: 19 Weeks – Who's Holding The Baby?

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Childcare

This week, I’d like to discuss the emotive issue of childcare – who to leave your baby with, from what age and what your options are.

Parents

There is an argument for mums to look after their children full time until they go to school and I think that is what my mum did for me. You could even home school if you wanted to continue being with your children full-time and believed that was in their best interest.

I’m finding the childcare situation hard. I love being with my son and he is my responsibility. At the same time, childcare is so demanding that, occasionally, I want a break to be ‘me’ again and not the constant food source / entertainment / companion. We’re in a fortunate situation that Dillon’s grandparents want to babysit for us when they can, but we are also looking into a nursery place for when I go back to my studies and to work.

Nursery

The advantages of a nursery are that your child learns to socialise with other children from a young age, to share, to interact and be stimulated, even educated. I think the main disadvantages are going to be if it’s not a good nursery. There is also the cost (up to £60 a day), which is hopefully outweighed by you being able to earn a salary.

Another consideration is the waiting list. I had no idea how long it can take to get a place. It can take up to months, especially for popular nurseries.  Some mums even sign up for a nursery place while they are pregnant! I was told the best start date for a baby is September / October, because a bunch of kids leave in September when they start school and all the younger age ranges move up a class. By January, most nurseries are full again.

Relatives

Relatives may have no charge attached but it’s important to not take them for granted. Some grandparents almost want to be a parent again and they may offer full time childcare, and in some situations this is the only viable financial solution for a family.

Nanny

Other options are a childminder or a nanny or au pair but I’m not looking for full time childcare and I don’t want someone looking after Dillon in our home. I think the main disadvantage of an individual is if they wanted to be abusive or neglectful there is no-one around to notice. At a nursery, there are a lot of staff and more controls are in place over professional standards of care and competence.

The only way you can tell if a nursery is right for you is by visiting a nursery in person. I went to see two last week and both were well advertised, one was rated Good in an OFSTED report, the other OUTSTANDING and within the first ten minutes of being in each nursery I knew that one wasn’t right for my son and the other one was.

Babies’ age

In terms of age, I’m looking for Dillon to start at nursery two days a week from six months old.  Maternity leave in the UK is allowed for up to 12 months, so six months may seem very young, but some nurseries accept babies from six weeks old. I was told that the average age for babies starting at nursery is currently between nine and 12 months old. A benefit for starting childcare at six months or earlier is that the baby is not so attached to the parent that they get upset when you leave them.

Whether Dillon misses me or not at nursery, I know I will find it hard to leave him there. But I want to provide for him and I want to be a good role model. I hope it all works out.

What the baby has been doing this week

Dillon is a smiler. For the first few weeks of their life babies only smile when they pass wind! and they start to genuinely smile from between six and eight weeks old. I wish I had written down when Dillon first smiled or laughed, but it is genuinely delightful when he does and he has been doing so for a good six weeks, maybe longer. He responds very well to people smiling at him if they hold their faces close and he imitates other people’s laughter.  In the past couple of weeks he has noticed our dog fetching balls and toys and this makes him laugh.

Classes

We’ve recently signed Dillon up for baby sensory classes and also to swimming classes starting in September, so I’ll report on those when they start. I went to a free taster class for the baby sensory and it was very good for the children, a lot of songs, baby signing, toys, a puppet show, a light show (felt like an early introduction to children’s theatre!) and a chance to meet other mums and have a chat. Dillon spent the hour staring at everyone and everything and slept really well afterwards.

Until next time – if you work with children, please be good to them!

© Wendy Thomson

Wendy Thomson is the editor of www.femalearts.com an online publication which promotes women in the arts and in business.

Wendy's Baby Diary: 17 Weeks

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Hi, I’m Wendy. I’m in my thirties and I have a 17-week-old baby called Dillon.

I’m going to keep a weekly blog on what’s been happening with Dillon, which will hopefully be helpful to anyone who’s pregnant or has a young baby themselves. And I’m also hoping that it will be a great record for him to read when he grows up – or possibly just plain embarrassing.  :o)

In the meantime, if you have a baby or pregnancy-related question you would like answered, you can contact me via frostmag or email editor@femalearts.com and I’ll reply via this blog.

Christening

We recently had Dillon Christened, which was a great day and a good event for extended family and friends to officially welcome Dillon into the world, as well as the church. If you’re not religious. a naming day is a good alternative. A Chinese friend told me they have a tradition of celebrating when the baby is 100 days old.

I think having an official day to celebrate your baby when they are approximately three months old is good for many reasons. Immediately after the birth is too soon to be bombarded with well-wishers. You need time and some privacy to get used to your new arrival yourselves, with perhaps just close friends and relatives. But if you leave a bigger get together until their first birthday, they’re no longer a small helpless baby, but moving about and possibly talking, and even walking.

So, the three month mark is a good compromise. Not so young that you can’t cope, but not so old that the relatives think they have missed out. Three months also seems to be the age that babies appear on TV or book covers as the standard image of a baby. When they’re born, they look too small – because we’re not used to seeing them that size!

Goods

We all know that children are expensive. They shouldn’t be, but we live in a consumer society and we are anxious parents who want our children to be safe, well-educated and stimulated. Guilt sells so many items!

I hate the parent guilt trip, so please do whatever makes sense to you, as parental instinct will see you right. However, I am happy to recommend products that have worked for me and Dillon.

Pampers – You can try other brands of nappies and we did – cheaper, store own brands. And the baby’s shit leaked everywhere. Pampers do a great job of keeping everything in, so long as you change the nappy regularly (after a feed or every two to three hours).

Nappies in general – Make sure your baby is wearing the right size. This changes quickly. Dillon is nearly four months old and in size three, so that’s nearly one size change a month. Buying in bulk may seem like a good idea, as they can get through as many as 12 nappies a day! But you could end up with a lot of nappies left over, as they grow so fast. Of course, you could go down the eco-route and buy washable Terry nappies. I think our environment is important, but I had to draw a line.

Clothes – Similar to nappies. Don’t be tempted to buy loads of newborn outfits. If your baby is born at an average weight (anywhere between 5-8lbs) they may only be in newborn clothes for a matter of weeks. Then the next size of clothes (0-3 months) will only last another couple of months before they’re into the next size (3-6 months). I find it hard to believe that an entire new set of clothes are required every three months. Why hasn’t someone invented adjustable clothes that last six months or a year? But this is capitalism at its best, so be careful and don’t get carried away buying expensive outfits which will only be worn a few times.

Bumbo – Funny sounding seat that is brilliant for babies once they can hold their head and want to sit upright. It is ergonomically designed to hold the baby in place and they seem very happy in their throne. Dillon used his for the first time today and was so delighted, he christened it in the typical ‘throne’ manner (perhaps potty training will go well). I have a lot of chairs for Dillon, some better than others. We live in a three-storey town house, so I want one baby chair on each floor to avoid having to carry chairs up and down the stairs – as well as the baby.

Fisher Price Aquarium Take Along Swing – This is a musical chair that Dillon really enjoys sitting in for about 15 minutes, before he gets bored or frustrated! This was a used gift from friends of my in-laws. I recommend not buying everything new for a baby. It is too expensive and these items take up a lot of space. But if you don’t know where an item has come from (e.g. not passed down by relatives or friends) then of course take precautions and check the product thoroughly for safety. And if in doubt, don’t use it. However, the only items that should always be brand new are your baby’s cot mattress and car seat.

What’s new this week

Dillon is now rolling himself onto his side and his front. It came to light when my husband asked me if I’d put Dillon to bed on his front. “Of course not,” I replied indignantly (as this is a known cause of cot death) we turned him onto his back, and he immediately flipped himself onto his front again!

It’s a good thing for babies to do this (when awake) because they are getting ready to crawl.

Until next time – happy parenting,
Wendy.

© Wendy Thomson 2011
http://www.femalearts.com