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Albino or Blonde?

7 replies

BlondieR22 · 21/05/2022 16:16

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:
NotAScoobyToBeSeen · 21/05/2022 16:20

I know a baby who had white hair and eye lashes and turned out to be a readhead. No experience of the optic nerve though Im afraid

SummerHouse · 21/05/2022 16:23

Are you or your partner very fair haired OP?

BlondieR22 · 21/05/2022 16:38

@NotAScoobyToBeSeen my partners mum is naturally a red head so this could be possible…

@SummerHouse we both have dirty blonde colour hair that lightens in the sun. I was very blonde as a child but born with black hair! My partner was born with lightish hair and it did go white blonde when he was a few months old. We both have blue eyes (lighter eyes then my child).

OP posts:
TTTurner · 09/05/2023 19:48

Hi my lovely.

I know you wrote this a while ago but just wondering what the outcome was? X

BlondieR22 · 24/05/2023 06:57

Hi@TTTurner

we still have no outcome… he has regular eye tests about every 3 months in which so far all is good. The albinism word gets thrown around but nothing has really been pursued. I don’t think he has enough characteristics to be diagnosed. They are however doing an electro diagnostic test in august if he complies which I think of the results come back that the electro signals between his eyes and brain are crossed then that would count as another characteristic and he would then be put forward for blood testing.

it really isn’t something that I think about much anymore, and he does just look like a little blonde toddler now it was more when he was newborn the white blonde hair seemed rare. His eyelashes have the tiniest bit of pigment now and I found the first summer as a baby he struggled with the sun in his eyes but not now he’s walking about it really doesn’t seem to bother him he just squints like the rest of us so I wouldn’t even know now if I would say he has photophobia and he doesn’t have a lazy eye anymore either.

I can update on here with further results in august if you are interested :)

OP posts:
Teresa2312 · 10/03/2025 22:16

I know this was posted a while ago but did you get any diagnosis at the end? I have a 9 month old baby boy and I am in the same situation, eyes seem absolutely fine but, hair and eye lashes are basically white, very sensitive to light
thank you

BlondieR22 · 11/03/2025 20:11

Hi @Teresa2312

we have no definite answer yet as we are waiting genetic testing. His hair is much darker now but eyelashes and brows still almost white and his strabismus has got worse as he’s got older (he’s 3 now!) although regular eye exams show his vision appears good.

Doctors have informally diagnosed him and we will get a proper diagnosis once bloods are back but I’d be very very shocked if he doesn’t have albinism, although I’m interested to know what type as the drs we see say he has a very ‘mild’ variant. I’ve had a daughter since, who was born with dark hair and lashes and it’s confirmed everything for me.

best of luck with your baby. I remember feeling so anxious when my little one was this age but if they do happen to have albinism it really isn’t a big deal once you digest it and watch them flourish xxx

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