Here is my beautiful baby Dotty Daisy,she is only a day old.
The doctors and Nurses took her away for the first time,for chromosome tests,various other test,lumbar puncture,and these pictures. I wish id gone as well,it felt like they took her forever. I sat on the general maternity ward alone,none of the midwives where aware(fully) of what Daisy had or didn't have!. Daisy was born 37+2. Daisy wasn't put in NICO(Intense care),the nurse even popped a woolly hat on her!. Daisy was then Diagnosed with Adams-Oliver Syndrome roughly a day after Birth.
At this stage I was told there was no Skin approx 15x15cm on her head,There was a Defect of the Skull(scans will be arranged). There had been a unexplained rare occurrence in the early stages of pregnancy,coursing atomic banding of the feet(I think that's how its said?) Webbed toes, ends of the odd toe and nail missing,overlapping of the odd toe also. Daisy also had a 6mm hole in the Heat ASD. Pulmonary Arterial Sternosis(narrowing of the main Artery's) She later developed Apnea,meaning she can stop breathing at any time,we were shown how to resuscitate her at GOSH,Shes had 3 Big attacks there,one attack happened when my other 2 kiddies had came to London to visit Daisy and I. It was a really hard,lonely time for them. Thank you kiddy's for being so strong and brave,there was so much distance between us,but yet we were closer than ever....
Medical Illustration Pictures, taken at Norfolk and Norwich University Hospital. The Doctor told us we could only get copies if we paid £5 per picture!, Luckily another kind Doctor understood my disapproval, and we got the pictures,finally..
Daisy CT Scans- 3months old at NNUH
Below are examples of 'Normal' Scan Images- for a newborn
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| Daisy will always wear a Helmet,until surgery. |
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| Daisy foot |
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Daises other foot
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16 comments:
i have a friend who has adam olivers syndrome and her daughter was born with it too. i decided to look the rare genetic syndrome up as i had never heard of this before and some of the details pertaining to the head are most disturbing. my friend however, suffers greatly as a result and because of her suffering regarding her disability shes riduculed, frowned upon, stared at and treated poorly. shes very smart, perceptive and insightful and i greatly admire her for it. there is always hope and there will always be ways around it. my friend although, suffering from aos has taught me lots and has inspired me to be a stronger person and for that i thank her.
i have a friend that has aos and she suffers greatly. people look down on her, stare, judge and are very rude with her. i have learned alot from her and she has inspired me to be stronger. its not easy to live with and on some level i can understand because i too have a disibility and i was born with alcohol related neurological birth defects, formerly called fetal alcohol effect, so i know what suffering is about. the journey is long, hard and worth it.
My son actually was diagnosed with Adams oliver when he was a week old... Had the scalp and skull defect along with some odd toes and a heart condition known as truncus arteriosis. Ido believe that having a baby with so many issues makes them and you a stronger person.
My son actually was diagnosed with Adams oliver when he was a week old... Had the scalp and skull defect along with some odd toes and a heart condition known as truncus arteriosis. Ido believe that having a baby with so many issues makes them and you a stronger person.
Thank you that is so good to hear. Xx
I have a daughter who has Adams Oliver. She wasnt diagnosed til 9 months. She was born with a slight scalp defect and her toes werent formed, she only has toenails on her big toes. I found this all very ditressing. She is now 5 and started school in August 2012. And nothing holds her back. But its hard to find someone to speak with as its so rare.
I was actually born with adams oliver in 1981. They miss diagnosede with acutis aplasia until last year. I had volunteered for a gene study. I was just amazed at your daughters pictures they look just like mine!. And my toes are weirdly formed but I do have all of my tie nails. I was also born with not only a heart defect but a stomach defect. I just wanted to let you know give her all the confidence in the world and she will be amazing. I went to college got married and had 2 amazing and perfect children. I never has esteem issues and continued with surgeries (11 total) untill I was 16. Good luck and if you have any questions I don't mind answering.
I was actually born with adams oliver in 1981. They miss diagnosede with acutis aplasia until last year. I had volunteered for a gene study. I was just amazed at your daughters pictures they look just like mine!. And my toes are weirdly formed but I do have all of my tie nails. I was also born with not only a heart defect but a stomach defect. I just wanted to let you know give her all the confidence in the world and she will be amazing. I went to college got married and had 2 amazing and perfect children. I never has esteem issues and continued with surgeries (11 total) untill I was 16. Good luck and if you have any questions I don't mind answering.
Hi Daisy,
Looking up information on Aplasia Cutis took me to your website.
My daughter was born on 28 January with Aplasia Cutis Congenita with skull defect.
Se missed skull on her head, size 4.5cm to 8.5cm. Only ten days too early but very small and thin (45.5cm long and 2.2kg,tour of her head was only 32cm).
She was on NIC for 2 weeks and is doing fine now. She has undergone surgery when she was 3 days old. She's very tough. They operated on her for 5 hours: a plastic surgeon (to close the skin with rotational flaps) and a neurosurgeon (to operate on the missing skull).
We didn't get any other diagnose. But they examine her thoroughly every month (plastics s, neurus, osn pediatrician, doctors of the NIC,...)
Still a long way to go...
Hi Daisy,
Looking up information on Aplasia Cutis took me to your website.
My daughter was born on 28 January with Aplasia Cutis Congenita with skull defect.
Se missed skull on her head, size 4.5cm to 8.5cm. Only ten days too early but very small and thin (45.5cm long and 2.2kg,tour of her head was only 32cm).
She was on NIC for 2 weeks and is doing fine now. She has undergone surgery when she was 3 days old. She's very tough. They operated on her for 5 hours: a plastic surgeon (to close the skin with rotational flaps) and a neurosurgeon (to operate on the missing skull).
We didn't get any other diagnose. But they examine her thoroughly every month (plastics s, neurus, osn pediatrician, doctors of the NIC,...)
Still a long way to go...
My daughter was born with AOS as well, and I've had a hard time finding info on anyone that actually has the syndrome I have seen so much research but no one that actually has this. & I guess I'm just saying it's good to see your little girl with a smile on her face. It gives me hope.
My daughter was born with AOS I don't know of anyone in my or her fathers family with it... We had never heard of it and the doctors at the beginning hadn't either came as a big suprise. But, I must say I completely agree... I was horrified at the thought of anyone even looking at my baby girl as if something was "wrong" with her, but it is great to know there are people out there with this condition and I know she will be strong and have a great support system so we can get through this.
Hi Everyone, My name is Debbie, I live in Esperance, Western Australia. I had 3 Children all with AOS,1975,1977 & 1979,back then NOBODY gave me a name for it! It was'nt til 2002, I got a name AOS! When my 6 th Grandchild was born, 7 out of 9 of my Grandchildren have AOS.(from 19998 to 2008) I found out that I'm a carrier 3 yrs ago and have'nt had much Help at ALL, everything I know about it I have done myself! If anyone wants to contact me my email is, debbie1757@hotmail.com Thanku
dear dotty's mum.
my doughter has exactly the same feet and hands of yours! her name is maria sole (we are italian)
now she is 3 years old and an half.
here in italy everyone told us that we can't do anything to make the feet better.
right now she doesn't have problem for walking or jumping..
i read that your beautiful girl had more problem but she you have resolved them :-)
my questions are
- dotty had never problems to walk? she is older than maria sole, so probably you could tell me something about ..
- do you have find a problem the aspect of the feet?
dear dotty's mum.
my doughter has exactly the same feet and hands of yours! her name is maria sole (we are italian)
now she is 3 years old and an half.
here in italy everyone told us that we can't do anything to make the feet better.
right now she doesn't have problem for walking or jumping..
i read that your beautiful girl had more problem but she you have resolved them :-)
my questions are
- dotty had never problems to walk? she is older than maria sole, so probably you could tell me something about ..
- do you have find a problem the aspect of the feet?
My baby was born with AOS JUNE 3rd 2017.... I'm so scared for my baby.... she has so many doctors.... she goes for an MRI Dec 22 to see if the skull is closing if not she will need surgery.... I'm trying so hard to stay strong for her
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