Please read and give any advise you can!!!

Britney - posted on 07/20/2010 ( 78 moms have responded )

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My daughter is two months old, she was born with a lot of heart problems that will require sergury to fix, coloboma in both eyes which means she is legally blind and had to have sergury on her windbox a few weeks ago to keep it from collapsing. She had genetic testing done a few weeks ago and we got the results yesterday, they said she has Mowat-Wilson syndrome, a deletion in the 2nd chromosome that only about 170 people worldwide have ever diagnosed with so there is limited information on the syndrome. They told us this means she will have some form of mental retardation, have sezures, may never speak, will have trouble walking, will not have children and may have a part of her brain missing. I am saying all of this because i need to know if there is anyone out there that knows anything about this or can give me any advise on how to get through this. Thank you Britney

MOST HELPFUL POSTS

JuLeah - posted on 07/20/2010

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I don't know about Mowat-Wilson, but I have known many children born with disabilities.

Many that walk had parents that were told they never would. Many that complete high school have parents that were told they would not see their second birthday. Many that have active fun lives also have parents that were told to put them in an institution and have another child.

Doctors usually give you the worst poss. outcome. Truth is, they don't know. No one knows much about this.

I was told I'd never walk after a car crash, and didn't for 7 years. Today, I do.

Never have expectations too low for you child, or she will meet them.

Never assume it can't be done. There is AMAZING technology out there to assist folks with different abilities.

Get in touch with people who will tell you the many possibilities, and not just the 'limits you must learn to accept'

Get in touch with the blind community and learn now what you can put in your daughter's life to make up for her lack of vision.

If she never speaks, get her a communication board. I know two children who sign like Helen Keller did. But, don't assume she won't speak just cause some person in a white coat told you she wouldn't. They didn't tell her and she may not know, or agree with that prediction.

Find support groups; surround yourself with people who will say helpful things.

It is normal to grieve, to be angry that the dreams you had won't unfold as you wanted.

Hang tough! Cry, and then hang tough again. Become the expert on this, your doctors are not.

As I believe, this child was born to you for a reason. She was born for a reason and you were slected as the ones who might best guide her as she grows.

Renae - posted on 07/20/2010

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Please take in everything JuLeah said.

I used to look after a little girl who was brain damaged (found unconscious in a swimming pool by her mother, was without oxygen for a long time and took a very persistent doctor 3 hours to revive her, they were about to give up when she finally came back).

When I first saw her she was completely paralysed, or so they they thought, but when I walked in she moved her eyes to look at me. That was the first sign that there was something left of her brain and the first time she had recognised anyone.

Her mother was told to put her in a home, she would never be able to move a muscle, would never feed herself and would wear diapers forever. She was a vegetable, could understand no more than a newborn baby, she would be that way forever and the doctor regreting reviving her.

Well, she is now about 20 years old. I still occasionally keep in touch with her mother. She has just moved out of home, she finished highschool and she is now a hairdresser or beautician or something like that.

Her mother NEVER GAVE UP! She simply did not accept that her child would be a vegetable for the rest of her life. She raised funds and hired all sorts of professionals, physical therapists, speech therapists, psychologists, there were about 12 different people there every week. The little girl took 1 year to learn to sit up, then she learned to roll, then she learned to crawl (that was after about 3 years). She literally releared everything just like going through infancy all over again. 10 years later she was in school, just like a normal kid, only one year behind. To look at her now you would never know that she was supposed to be a vegetable forever.

So I'm sorry that I know nothing about the disorder you are facing. I strongly suggest you do whatever it takes (contact the media perhaps) to find the few other parents out there who are dealing with it because they are your best chance of some help. I hope someone on here can help you.

Never give up! :)

78 Comments

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Cindy - posted on 06/27/2011

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I have a wonderful support group on facebook i think you should join. they have helped me in so many ways.. it is called Heeling comfort zone..

Cindy - posted on 06/27/2011

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I have you in prayer hun! but never underestimate your child. my daughter was born with 2 holes in her heart the size of a quarter and for a preemie of 3 lbs that wasnt good. they told me she would have to have surgery by the age of 1. before she even turned 1 the cardiolgist released her because God healed my daughter and he will be there for you

Cindy - posted on 06/27/2011

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I have you in prayer hun! but never underestimate your child. my daughter was born with 2 holes in her heart the size of a quarter and for a preemie of 3 lbs that wasnt good. they told me she would have to have surgery by the age of 1. before she even turned 1 the cardiolgist released her because God healed my daughter and he will be there for you

Dave - posted on 09/19/2010

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Hello Britney,
We run a webstie dedicated to Mowat-Wilson Syndrome. Our grandson was diagnosed with MWS in 2004. We also run an email support group for MWS with about 100 members on it. If you would like more infromation please contact us.
Dave, Deby and Chase 9 years old MWS

Britney - posted on 07/27/2010

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thank you all so very much. she is a blessing and suprises everyone everyday. she loves to roll over (this is something we were told she may not do until 9 or 10 months old) and loves to smile at everything and everyone. she is such a joy to be around and watching her and our son brings me more happiness than i probably deserve. we will continue to stay strong and pray our hearts out.

[deleted account]

Britney, I sent you a personal message with a link to a blog. The blog is written by a friend of mine who has a 2 year old daughter with deletion in the second chromosome and has had heart surgery. I'm pretty positive that she doesn't have the same condition as your daughter, but there are a lot of similarities. Maybe you can find some encouragement from it. =)

[deleted account]

This is a quote from a book about raising special needs children:

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sonnya - posted on 07/27/2010

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Just love her. In that poor besieged body is a person with perceptions and needs like anyone else. Children and handicapped people are dependent not only on what we do for/with them, but also HOW, and even what we think. No amount of loving ever goes to waste. She has something to teach you, and she came to you for a reason. Maybe there is even a blessing in there somewhere. She must be a strong little person to keep on despite all the difficulties, and she is calling on your strength too! I wish you all the best, for however long you have time together on this earth.

Britney - posted on 07/27/2010

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thank you all very much, i believe God is working miracles. thank you for all your support.

Elainegrace - posted on 07/26/2010

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hi Britney,i am so much touch with you and your daughter's story. its really inspiring!!!!.do you believe that God has a reason why this happened?your daughter is such a precious gift....i truely belief that God will do something...the anly thing that we can do is to PRAY...can can move mountain...YES GOD CAN.....me and my family will pray for your family...God bless you both.....

User - posted on 07/26/2010

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I'm sorry I don't know anything about this syndrome,but I will pray for your precious little girl.Stay positive and say a lot of prayers,I'm not very religious but I do know that God won't give you more than you can handle even if it seems that way,He knows what you are capable of.Britney I hope ALL the best to come for your daughter and your Family,Stay strong.

Riki - posted on 07/25/2010

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i have no advice....only that God has given you a little angel. He has his plans for you and her. What they are only you and your family will know! Prayers for you and your daughter!

Tanya - posted on 07/25/2010

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I dont know how to help, but just love her. A friend of mine's son was born with alot of problems and she was told that he would never walk or talk. And he is 10 yrs old now and walking and talking, he has a speak impairment but he is doing good. I hope your daughter is ok. all i can say is have faith and believe.

Paula - posted on 07/25/2010

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I can only pray that God blesses you and your family richly through this trying time. I know he lives and He does listen to our prayers. Do not give up hope. My girls and I will keep praying for your little princess.

Paula

Fatima - posted on 07/25/2010

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May God always Bless Dawn, a lovely name. Prayers and lots of prayers can lead to miracles and miracles do happen. I will keep Baby Dawn and you in my prayers......and there will be a rainbow.

[deleted account]

I also do not have any info on this but keep plugging away at the internet and I wish you and your little angel the best of luck and she is in my prayers!!!!

Jennifer - posted on 07/25/2010

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I don't know anything about this syndrome but I deal with a lot of medical issues of my own and I have four children, and am a single non working mother. My biggest suggestions would be prayer and contacting either the Shriners Hospital or St. Judes. They are both geared towards helping only children with the latest and greating newest technology and they may be able to help. Ask your doctor to send her medical records to them and just pray and wait and see what they have to say.. God Bless you and your daughter and family.... He can heal all!!!

Amber - posted on 07/24/2010

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i just googled mowat-wilson and there are some web sites that explain alot of the information u are lookin for!!!!! it takes a strong mom to ask for help god bless u and best wishes and luck if i find anymore info i will let u know

Tina - posted on 07/24/2010

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BRITNEY,
THE BEST ADVICE I CAN GIVE YOU IS NOT MEDICAL BUT MIRACLE..AND THATS OUR GOD ONLY HE HAS WHAT YOU NEED AND GO TO HIM WITH IT..AS I WILL TONITE FOR YOU AND THIS BABY..GO AND BELIEVE..MY PRAYERS ARE WITH YOU AND YOURS

Britney - posted on 07/24/2010

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thank you i am sorry to hear about your son and my family will pray for yours.

Rose - posted on 07/24/2010

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I am soo sorry you are going through this. My son was born with kyphosis/scolisos and inbalance of spinal fluid in the brain. He has 4 therapist that come see him once a week. Not sure where she is being taking care of, but I strongely believe in Childrens Mememorial Hospital, they do everything they possible can. Someone told me that when you do prayer, you need to prayer for the strenght and the peace in you. It has help me a little. Always think postive no negative!

Britney - posted on 07/24/2010

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I am so glad your children are doing so well, i have heard how stressful autism can be and can see your doing a wonderful job. I am trying to find our new normal and think i will accomplish it soon. Not coddling might be way more difficult for me but i hope to find a middle ground there someday too. I have been looking for support groups and there are for her disabilities as seperate ones but none for them in a group. Lena's genetic doctor is going to set us up with some MWS families world wide so i am hoping for that to come through soon. Thank you for your story it was very encouraging for me and i am so happy for you. Britney

Christina - posted on 07/24/2010

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Two of my children have autism. My best advice as a mom to special needs children to another mom is treat your child as normal as possible. Make allowances for their disabilities (like I allowed my auties to have their pacifiers until the ages of 4yrs and 6yrs) but don't coddle them. I expect the same good behavior from all five children, regardless that two have autism. In keeping with that philosophy, my autistic 7yr old went from being severely autistic to mild and high functioning, at a 3rd grade reading level, and went from needing tons of therapy to only theraputic support staff at school. Still working on the 4yr old. Good luck. Find support groups in your area.

Britney - posted on 07/23/2010

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thank you all. jennifer i am so sorry for your loss. I am working with a lot of different agencies to get all of us the help we need. I do have a 3 year old son that my husband and i try as hard as we can to make his life as "normal" as possible. I do worry it is not enough for him but he seems ok for the moment. He starts school next month and i hope it helps him by giving him something to do with other kids outside the home. He is so excited about it and we are excited for him, even though im not sure im ready. Thank you everyone so much for all your prayers and support.

Daphne - posted on 07/23/2010

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There is an organization that is very reputable that works to support families who are dealing with rare diseases. It is called NORD. National Organization of Rare Diseases. They are very helpful and they combine resources to help with diseases that normally do not get much money for research in an area due to it's rarity. Also, make sure and stay in the loop by contacting the early intervention program that is available here in Texas (and other states)
The social worker at the hospital should get you into the program. You can also call the local school district and they will give you the info.(Sometimes called ChildFind or ECI) As mentioned earlier in the posts, you should keep good notes on everyone you talk with and keep a good notebook going with cards of all the professionals you deal with. Your daughter will have lots of opportunities and support. Unfortunately, you will need to be her biggest advocate. With that being said, you must take good care of yourself. You can not give her what you don't have within you.
Be mindful of your other children (if you have any)... they can get lost in the mix and grieve as well. You are now in a new land, so to speak, and you must learn the language and it's ways. There is a beautiful poem a parent wrote of "landing"in the place when she was not fully prepared to be but she learned to love it anyway. May you take one day at a time and may you feel peace.

I use to work in this field as a social worker and know many of the things you need to know about services, benefits, rights, agencies, etc., so please feel free to contact me.
You are in my prayers.....

Claudia - posted on 07/23/2010

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so sorry to hear that. But did u ever stop to think that maybe this was ur mission in life and maybe to bring awareness reserch for other parents that are going through this. God never sends us something we cant handle. U were chosen for a reason. MAy god bless u and your wonderful family Claudia

Virginia - posted on 07/23/2010

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This is the time were you will only see one set of footprints god is with you and your famley and try to take one day at a time and learn from each day

Shawn - posted on 07/23/2010

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Hi miss Britney Price,I know that syndromes are hard to work through. i have Prader-Willi Syndrome and it is hard to work through.But i made it through and done a lot of things that the doctor said i wouldn't be able to do.I beleive she will make it through her syndrome too.I am on the pws adult advisory board.And i am 36 years old female.From Shawn Cooper

Jennifer - posted on 07/23/2010

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Everyone wants to tell you those cliches about God doesn't give you more than you can handle, I learned that surrender isn't an option and any chance my son would have was me. Hospital libraries, nicu nurses, and pt, ot, and speech therapistis are outstanding resourses, and I'll add that I also carried around a notebook with the things I had questions about with me all the time, just in case. Also, for your health, take 30 minutes a day to just do you (bath, makeup, exercise, whatever you do that makes you feel "beautiful", even if you might be crying while doing it, your tears release stress so don't forget to let them fall everyone once in a while too!) Good Luck, your child needs you and LOVES you, even if she can't ever say it to you, my son never spoke or cried his entire life, but he knew love and I will add that he hit more milestones than anyone ever dreamed, lived well beyond what they told me, and gave me a better understanding and more love than I ever knew existed. Again, good luck, you CAN do this.

Diane - posted on 07/23/2010

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It is always great to have a place you can go to at least talk about what is going on with your little one. I wish I knew of such a place when my son was born. It was such a hard time for us. I will say that we were told that Damon wouldn't be able to do so many things, and day by day he proved the experts wrong. We laughed when he held his head up because he was not supposed to have the neck muscles to do that as an infant. He was never supposed to do more than an army crawl, and at 12 months he was crawling like every other baby. we were told running would be so difficult for him, and he started running once he figured out how to walk. Most research says don't don't don't, we found a geneticist who said forget the don't and let him guide you. He will teach you what you need to know, just follow his lead. When I heard that I felt so much better because I can see that he is able to do leaps and bounds more than all the research says he should be able to do and I would hate to put limitations on him because I think I should. We have done right by him so far, we are cautious and know all there is to know, but it's also so very important to allow them to live a happy life and be able to enjoy your child exactly as god intended them to be. :) I know right now you are probably beside yourself with questions and thoughts, I know I was with Damon my advice to you is this, you have done your research and seem to have exhausted your sources for now. Take some time and some pictures and have some fun. I made a scrap book for Damon. I put all my spare time and energy that I would have used worrying and making myself insane into a project that perfectly embodied my beautiful little man. When I was creating this I couldn't even think of his disability and 5 years later he loves it. Sometimes he wants me to look through it with him before bed. It's become one of his favorite things. Maybe something like this will take your mind off the negative and allow you some time to focus on the beauty that is your little angel for a while. :)

Deirdre O - posted on 07/23/2010

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sorry girl i dont have any advice for you but im sending you my best wishes to you and your daughter you sound like a brill mum and i know you will do well for her good luck and it will all work out for you in the end

Wendy - posted on 07/23/2010

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I went through alot when my daughter was born at 4lbs 4 oz - She is now 22 years old. Praying does help and just take it a day at a time . Also just love her she is a very special child.

Holly - posted on 07/23/2010

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I know nothing about your baby's diagnoses. I do know a lot about babies. My advice is to continue to love and nuture your baby. Love can perform miracles - never stop. Keep going.

Britney - posted on 07/23/2010

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thank you all for your kind words and prayers, it is really great to have so much support.

Natasha - posted on 07/23/2010

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I have worked with many children with disabilities and i have a sister with Downs Syndrome and one thing i have learnt is that most of the time they can do a lot more then doctors will ever give them credit for! I am so sorry you have to go through this but i firmly believe that there is a reason for everything. I pray that God will give you, your family and all your loved ones the strength to go through this tough stage. All the best xoxo

Angela - posted on 07/23/2010

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even though i have never gone through this kinda thing before, i just wanted show some support. im sure it is very hard going through that kind of situation, but just hope and pray for the best. you brought her into this world, there is no way she will be taken out. im so sorry about what youre going through and im praying for your daughter.
angie

Desiree - posted on 07/23/2010

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Add me as a friend plz, i would really like to keep in touch with you and Katilena Dawn Price, im very sorry to hear your story, you and all the other women who comment on this story, Britt your story made me cry, and i really would like to be your firend. you and your angle

Joanne - posted on 07/23/2010

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Hi Britney
I wish you and your family every bit of luck love and strength i can send to you x The only words of wisdom i can offer are stay strong. You hold in your arms a perfect little creation, whatever obstacles you have to overcome she is perfect in her way so just focus on that. Cheesy I know, but as the beatles said ''all you need is love'' Just make sure that once a day you have 'me' time, even if its 5 minutes sat in the bathroom just to refocus on everything else around you. I am not religious and dont often pray to god, but i do believe that we are dealt a hand that we are strong enough to deal with, so that little girl is very lucky indeed x again, i wish you love luck happiness and strength xx

Britney - posted on 07/22/2010

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thank you everyone for all your advice, thoughts, and prayers. it is really good to know there are people like all of our out there. torrie, what more would you like to know?

Francesca - posted on 07/22/2010

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I wish I could offer you advice or a name of someone who can. But all I can offer is an ear if you ever need to vent and our prayers.

Torrie - posted on 07/22/2010

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Can you tell me a bit more about her disease? I am an herbal specialist and also have a good friend who is a Master Herbalist and I would like to be able to help you and your child in some way. Alternative medicines are being used more and more everyday.
Torrie Woods

Jackie - posted on 07/22/2010

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Oh my goodness your daughter sure has a fight on her hands. I have no advice for you other than try and stay strong, mother nature works in strange ways and she wouldn't have given you a daughter with so much against her if she didn't think that you could do it. Have faith in yourself, keep your head up high. My thoughts are with you xxoo



Jackie Presch

[deleted account]

Britney.. as a mother of a son who has a mild case of CP.. i feel for you.. i admire you.. i dont know much of anything about the syndrome your daughter has. i know i am not near of having to deal with what you do, however, i hold a special place for you in my heart. God is wonderful and knows who has strong hearts, especially when it comes to women. You have a special place within Him. I will pray for you, your daughter and ur family.. Just know that you are an angel. God is with you

Theresa - posted on 07/22/2010

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All I can say is love like you have never loved, and pray. Prayer does wonders. She is a gift from God and will touch and change your life as well as others around without even knowing it.

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