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Albino or blonde?

27 replies

BlondieR22 · 22/05/2022 19:15

Hi All,

This is my first post, and it may be rather lengthy so I apologise now and thank you for reading! I have a beautiful 4 month old baby boy and I have been lurking in the background reading all the posts from sleep deprivation, to feeding advice and have found great comfort in mumsnet through the early days of motherhood!

My baby boy was born 4 months ago, he was born with a lot of hair! White hair! It shocked us to say the least. It was almost silver but has since turned slightly more golden (ever so slightly) his eyelashes have come through very very light blonde (maybe white) and the same as his eyebrows. His eyes are blue (quite a dark blue) and his skin is of course white like mine and my partners. He is pale, but aren’t most white babies? He hasn’t got milky white skin.

when he was born the midwives came round to see him in amazement at his hair, most saying they had never seen a baby with that colour hair. He had his first obs and nothing was mentioned out of the ordinary.

once we came home from hospital and the hormones had calmed down! It all kind of hit me how white his hair was and after some Googling I realised just how unique he was. The only babies I could find with white hair like his had albinism. And according to google the white eyelashes were a major give away for albinism!

i decided to ask my doctor at his 6 week check up and was pretty much dismissed. They checked his eyes and were happy they didn’t look like they held signs of albinism.

anyway, recently he has been referred to the hospital as he has blocked tear ducts that became infected. Whilst there they conducted an eye exam (apparently standard practise) the results were that he had a pale optic nerve. This of course meant nothing to me and we had a really un helpful doctor who didn’t explain much! Although she began to ask questions about his pale hair and did it run in the family. I knew what she was getting at and asked if he could have albinism and she said well yes the pale optic nerve is a characteristic along with his hair.

we have since had to go for a vision test, in which they are happy with his vision and it seems on track for a 4 month old (although it’s hard to get much accuracy at this age, but he happily follows toys etc). He does have a intermittent lazy eye which I had previously noticed which we are being seen again for in 3/4 months time to see if it corrects itself or if not I assume we will go down the route of treatment for this.

I asked if we would be doing genetic testing to see about the albinism, but have been told we will wait to see if any more characteristics popped up such as nystagmus. Although I understand why they wouldn’t want to rush into genetic testing.. I find this an agonising wait and I feel as though it has put a massive dark shadow on early motherhood. I have almost become obsessed by it , constantly googling albinism and the signs, and constantly testing his eyesight. he finds it hard to open his eyes in direct sunlight , and likes the hood of his pram to be up, but he has no problem with bright artificial lights indoors.

anyway .. I guess what I am asking is does it sound like my little boy is albino? Has anyone else had a baby born with white hair that’s not albino? Any light any one can shed would be so greatly appreciated.

I really needed to get that all of my chest! So thank you mumsnet.

I forgot to mention no one that we know of has albinism in the family.

thank you! From a very worried mumma

OP posts:
Tiredmum12389 · 22/05/2022 19:34

Hello.
My children all have incredibly blond hair. Blond eyelashes, blond eyebrows. They all have blue eyes and have good vision. Never considered albinism.

When They were born their hair was more like white feathers than hair. It was so white, as they have gotten older it has become the blondest you could be. However it started as white hair.

Try not to worry, eye tests would have picked up on eye issues. X

BlondieR22 · 22/05/2022 20:13

Thank you @Tiredmum12389 .

i really hope there is nothing to worry about. I know lazy eyes is a common trait for albinism too so there seems to be a few characteristics which I am praying is coincidental.

it is reassuring to hear of other babies being born with white hair though so thank you x

OP posts:
moggerhanger · 22/05/2022 20:19

My DS was so pale (with wispy white-gold hair and eyelashes) that all the midwives came to look at him. He also had a slightly lazy eye. He's now 12 and just really, really fair-skinned and freckly with blond hair (and hates suncream!) But not albino.

Interested in this thread?

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ShirleyJackson · 22/05/2022 20:28

My son has ocular albinism. So he doesn’t have the white hair and eyelashes, but nystagmus was picked up at his six month check, and he’s had glasses ever since.

He’s 22 now, hit all his milestones, was the first child in Europe to have pioneering eye surgery, went to mainstream school, passed GCSEs and A levels, took a year out to go travelling, is doing his degree, has a permanent part-time job, and, in short, is loving life. Nobody can believe it when they find out he’s registered blind. His attitude is amazing - when he went on the register, I cried and he shrugged and said, ‘Well, there’s worse registers to be on.’ 😂

I couldn’t be prouder of him. So enjoy your baby, OP, because even if your little boy does have albinism, it’s honestly not the end of the world.

BlondieR22 · 22/05/2022 20:48

@ShirleyJackson thats great to hear about your boy! He sounds amazing and I imagine you are immensely proud of him. Thank you for the positivity.

the eye dr actually referred to ocular albinism which I thought was strange when she then listed his hair as a characteristic! As I am aware this type of albinism only effects the eyes? With the nystagmus, was it obvious to you before he was diagnosed? I don’t think my baby has nystagmus but he does look around a lot and it is sometimes jerky, but I’m sure this is quite normal for a 4 month old.

OP posts:
BlondieR22 · 22/05/2022 20:49

@moggerhanger aw he sounds gorgeous! Did the lazy eye correct itself? Not sure if that is why we are waiting 3/4 months for next app

OP posts:
ShirleyJackson · 22/05/2022 20:53

I noticed his eyes were shaking, yes, and pointed it out to the doctor, who referred him to an eye specialist. He also had a lazy eye, which was patched when he was about four.

I’d never heard of nystagmus, or ocular albinism, at the time, so it was all a bit of a shock, and I went through some difficulties with it. I do understand how worried you must be.

My son does have blonde hair, but it isn’t white, and he has fair skin, but not unpigmented. He does go very slightly golden in the sun (unlike me, who goes from blue to white to red and back).

moggerhanger · 22/05/2022 20:53

@BlondieR22 yes,it did - if he's really tired it still turns inwards a bit, but he's aced all his eye tests so far.

BlondieR22 · 22/05/2022 21:03

@ShirleyJackson I wouldn’t say his eyes shake definitely not, so I think that is something to hold on to for us. Yes that must of come as a shock, but it sounds like his reaction to it all has been very well handled! I am worried, and almost obsessed by it but I really need to put it to the back of my head.

@moggerhanger that is good to hear. Lazy eyes run in my partners family including my partner (when tired but he will never admit to having one) hopefully the lazy eye is completely unrelated to albinism. Glad your boys is sorted.

OP posts:
Frozengirl · 13/04/2024 07:24

Hey is your baby albino?the way you are describing your baby it feels like my baby is same too and I'm worried about it..he has white hair lashes and eyebrows and his eyes are stable he is fair but normal fair not like white fair little reddish I'd say

Posypointshoes · 13/04/2024 07:33

My nephew was born with bright white hair and lots of it! It stayed white for a little while then slowly became more golden but is still very very white blonde.
he also has blue eyes and is fair.
never considered albinism.
He didn’t like opening his eyes in direct sunlight either, I don’t think a lot of people and babies too! Blue eyes can be quite sensitive as well.
the doctors have found the pale optic nerve and doing all the right things - it’s horrible when you obsess about something as it consumes you. One thing that helped with me in the newborn stages was to think well what if he is? And thinking about what I could do/what he would need to make it easier and make me feel like I’m in control.
look up Elsie Larson on Instagram she adopted a gorgeous little girl with albinism and sight issues it might make you feel a bit better to see a child with the condition thriving.
but I would say don’t worry at this stage, I would post a pic to show you how white haired my nephew was but it would be outing and my sister would be livid 😂🙈

Posypointshoes · 13/04/2024 07:33

I’ve just realised this is an old thread, sorry!

HikingFromHome · 13/04/2024 07:36

Albinoism generally comes with red/ pick eyes. What colour are his? In sure it would have been picked up by now.

HikingFromHome · 13/04/2024 07:36

Posypointshoes · 13/04/2024 07:33

I’ve just realised this is an old thread, sorry!

Argh

Frozengirl · 13/04/2024 07:37

Yeah its an old post but I posted it today

Frozengirl · 13/04/2024 07:38

My baby is now 11 days

Frozengirl · 13/04/2024 07:39

Can you please send me the pic please?

ThePerfectDog · 13/04/2024 07:41

ShirleyJackson · 22/05/2022 20:28

My son has ocular albinism. So he doesn’t have the white hair and eyelashes, but nystagmus was picked up at his six month check, and he’s had glasses ever since.

He’s 22 now, hit all his milestones, was the first child in Europe to have pioneering eye surgery, went to mainstream school, passed GCSEs and A levels, took a year out to go travelling, is doing his degree, has a permanent part-time job, and, in short, is loving life. Nobody can believe it when they find out he’s registered blind. His attitude is amazing - when he went on the register, I cried and he shrugged and said, ‘Well, there’s worse registers to be on.’ 😂

I couldn’t be prouder of him. So enjoy your baby, OP, because even if your little boy does have albinism, it’s honestly not the end of the world.

Your son sounds like he’s got a great sense of humour 🤣

Frozengirl · 13/04/2024 08:01

Sometimes it looks blue in bright light it looks dark brown idk what color it is exactly

Frozengirl · 13/04/2024 08:07

Please send me his pic old and new one

WarningOfGails · 13/04/2024 08:19

@BlondieR22 wondering if you have an update on your son - I hope all is well.

Ilovemyshed · 13/04/2024 08:24

Frozengirl · 13/04/2024 08:07

Please send me his pic old and new one

The poster said it would be outing. Stop demanding a photo of someone else's child.

YourNimblePeachTraybake · 13/04/2024 08:24

@Frozengirl I think you might have better luck starting your own thread. 💐

AlwaysWearSPF · 13/04/2024 08:26

My DS is seven months old and is very pale considering his father is bi racial. I'm also pale even though my father is from the Mediterranean. My DS is actually paler than me, I've been worried about that since he was three months old. I asked my GP and was dismissed also. For me I just want to make sure he is not lacking in vitamins or has a deficiency of some sort.

Frozengirl · 13/04/2024 09:27

Oh sorry I didn't know that

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