Diane
Kim, I am 36, married for 14 years to a great man. I have two of the greatest 11 year olds ever. I am so blessed. Kim you are so right we are not "syndrome". I put my trust in Him who knows all are steeps (long and SHORT).
Michelle
Three and a half years ago, I had given birth to a baby girl with Turners'. I found out at 16 weeks that she wasn't going to survive and she was born on day shy of 23 weeks. She had hydrops fetalis, cystic hygroma, hypoplastic heart, kidneys, and lungs. And her heart was only 1/3 of the size it should have been. I had never heard of Turners' before and I was told that no one knew what caused it let alone how to prevent it. My heart goes out to anyone having to deal with the situation. You are all in my prayers.
Lyriks' Mommy
Janine Brandon
Hi. My daughter was diagnosed when she was 11 with turners' syndrome. The only clue we had was she had stopped growing and her body shape was becoming different and she was gaining a lot of weight. She was very small and played sports and was never in house. I had a hard time getting clothes to fit her. I was very upset when Turner's syndrome was explained to me. Rachel started growth hormone right away and for 3 years I gave her a needle. They found nothing wrong with her heart until she turned 16 and has high blood pressure due to one small kidney. She also has diabetes and anxiety attacks when she has to deal with people. She was always shy and much attached to me. She is now 23 and has her own place but still wants to spend all her free time with me instead of her friends. She has not had a boyfriend and doesn't seem to care. She laughs at all her friends and their problems with boys and doesn't want any part of it. She is 5'5" and weights about 180 lbs. She has big shoulders and no waist. She is very loving and would like her own family some day. I don't know what I would do without her. She is a special gift and I will thank God for her every day. I also have 2 older sons who look after their sister. She works and looks after herself and also drives everywhere. Very competent since she turned 20. She is very proud that she looks after herself.
Janine
Clare
I have a bouncy bubbly 4 year old daughter with Turners Syndrome. She was diagnosed at birth as her hands and feet were very puffy / swollen and a simple blood test confirmed her condition. Doctors also told me a lot of this that could and would be wrong with her. She does have one kidney but in actual fact this is only due to the fact that it did not divide in the sixth month of my pregnancy and this is quite common in turner's babies. We have had not problems with this either. She too, was born early simply because upon a 36 week check up I was having Braxton hicks and it was thought that the heart beat was dropping at each contraction she was tangled and breech and a section took place. The only thing that is of any noticeable significance is her height. She is now taking a daily growth hormone with not side effects whatsoever. Her growth is going well. She appears to be as bright and intelligent as any other normal 4 year old and mischief is her middle name! I never had any problems with feeding or potty training. Her coordination is fine as she attends ballet lessons each week. Her teacher is very pleased with her progress. Obviously there are different degrees of Turners but many people I have spoken to and Turners children all appear to be relatively normal and leading normal lives and many people would not know that these children have a problem unless it is spoken about. Turner's syndrome is not all bad news I feel too that things don't always turn out the way the doctors expect. There is so much hope that your sister's baby could survive and lead a normal life. Keep us posted! Tell Good luck. I am willing to talk further on this too.
Clare
M. smith
With a heavy heart our family has also just lost an unborn baby girl to Turners Syndrome. We found out the results of tests yesterday. We are sad. We all feel such great loss, and we just don't understand how this happened to us. Try as we might, we can't begin to explain our grief and sorrow. This is now our second baby tragedy in the past 7 months...... Please all! Cherish your wee ones. They are the most precious gift a family can receive.
Grama
Lorna
My baby's heart beat stopped at 10 1/2 weeks. I had to have a D & C. The results just came back and it was Turner's syndrome. The doctor said it was better off because it would have a lot of problems if by some chance it did make it. I am distraught but we are going to try again and hopefully nothing will go wrong this time.
Kim
I was 23 when I was pregnant with my first child. I found out when I was 16 weeks pregnant that my daughter had Turners Syndrome. I had my daughter when I was 23 weeks pregnant. She was stillborn. I was devastated! She only had two chambers to her heart. She also had a cyst on the back of her neck and fluid in her lungs. I had never heard of this disease before I was pregnant with her and no one really helped me to deal with this.
Diane
I'm glad no one decided I should be terminated because I have turners and heart defect. If God wills I would have died not because a doctor plays God. Please Trust God.
Dayle
When I was pregnant with my twins, we too were told that one of them was TS and there was a very good chance that she or both would not survive the pregnancy. Guess what, they just had their 8th birthday. It is an extremely stressful time for you but before making any harsh decisions, do some research. You will find that girls and women that have Turners Syndrome live completely normal lives. Yes it's true that there may be some medical issues along the way but they are nothing that can not be dealt with if monitored. My daughter is the joy of our lives. She does fairly well in school, enjoys tap dancing and hip hop, plays baseball etc. She is just a regular kid. Does this doctor know all the facts regarding Turners Syndrome? You may just want to talk with someone that is familiar with the condition. There are some good websites on the internet where you can talk with others that have TS or have children with TS. Please don't jump into this decision without first finding out all there is to know.
Cheryl
Hi my name is Cheryl. I have a daughter with Turner's syndrome. She is going to be four years old on March 23 05. The doctors all told me she wouldn't learn to use the bathroom at the right age or do anything. I can tell you she is a very smart young girl and I know she was given to us for a reason. So my advice to you is to let your sister go through the pregnancy. Its all in god's hands what happens. But I feel she would be so much happier if she went through it. Please get back to me. Yours truly Cheryl.
Victoria
I have read all of these experiences and have felt like I should share mine. I am 31 and have TS. I did not find out until I was 15. I was then placed on growth hormones and that was where my treatment began. I am lucky because I don't have a heart problem or kidney problems that I know of. I feel like a normal healthy adult with minor problems that I see a specialist for TS for at the University of Utah Hospital. I have learned a lot about this disease. If anyone out there has been told that their unborn child will not live please see a specialist about the disease so you can make an informed decision of what to do. The only hard thing I have had to worry about by having TS is when I met the specialist and having been explained why I won't be able to have children and what TS is all about. This makes me sad and sometimes I feel like I am a "freak of nature" because no one really knows why this happens. Anyway, I guess I just want to say if any of you reading this are faced with a child who may bediagnosed with Turner's please don't give up and seek out treatment from a specialist. Dr. Kirtly Jones is a woman I would recommend you get in contact with if you have questions about this disease. She is located in the University of Utah Hospital. Good Luck with all your trials and searching and keep a positive attitude.
Alisabeth Pender
I am a 19 year old girl with Turners'. I was diagnosed at birth. My mother sat me down and explained to me when I was 9 what Turners' was. I am 5ft tall and am a completely normal girl. I work, go to school and hang out with my friends just like anybody else would. To any mother out there who is finding out that their little girl has Turners' there is nothing to be scared of. So what if I am short, good things come in small packages :) There are people that don't have turner's that are shorter than me. I did have to take the growth hormone shot from the time I was 9 until the time I was 13 when I started my period ( on my own I might add with no estrogen help) and now I am taking the estrogen patch. Thankfully I have done everything that the doctors said I wouldn't do. I have developed breast (very blessed in that area I might add). It's in the lord's hand and remember God never gives anybody anything they can't handle. A girl with Turners' lives a very normal routine life. The only way Turner's affects my everyday living is that fact that I AM SHORT. But that's ok. It could be worse in my opinion
Elisa in Arizona
Hello, I have a spunky 10 year old that has been diagnosed with Turners this year. She was born with puffy hands and feet but when she was tested the Doctors did not tell me anything was wrong. During these years her height did not change, her weight did. She has a stocky frame, solid as a rock. Coming from a small town that does not have reliable medical staff we did not know anything could or was wrong. I recently moved into the city and found an excellent Doctor at the Three Points Clinic. The Doctor ran tests and found why Leticia was so small. With the doctor explaining the diagnosis to my mother and myself we felt a little relief in knowing that there is help. Leticia has now started growth hormone treatments; she is so brave, each night being stuck with her medication. She is normal as can be, she actually is very mature for her age. I am blessed to have her in my life, and her siblings love her. The thoughts about Leticia having a normal life is now been reassured by her Doctor's and by Leticia herself. If anyone needs to talk I am here. I can relate and I can in turn be someone's rock in hard times.
Melissa
My name is Melissa. I am now 23 years old. I was diagnosed with TS at birth. Like your sister's baby, and many other cases, I was not supposed to be born. It is through the grace of God that I am here. I pray that you would encourage and support your sister with whatever decision she makes. Please send her my best and let her know that God has a plan for her and her little one on the way. Please keep me posted. God bless.
Lisa Cannon
My Name is Lisa and I have turner's and I'm 28 years old now. I've had a few problems with it. When I was born they weren't testing for it. I was 15 when they tested me for it. The doctors really didn't tell much about it. They told me that I wouldn't be able to have children and that I would have to take hormones for the rest of my life. I do have horse shoe kidneys. I think it's really great to be about see what other parents with turners kids are able to do. I wish that we had learned sooner. I would like to know if there are any other women my age with turners who are writing so I can get more info on it thanks Lisa
Betty
My daughter is 15 years old and has Turners. They diagnosed her when she was 13. She showed no other sign except for being short. Than they did the heart test and she has a heart condition, her kidneys seem to be functioning well. My advice to you is that not every child has the same symptoms or conditions. God blessed me with my Mari and if is willing he will bless you to.
LORI
I have a 25 year old daughter with turner's syndrome. For the most part her health has been good. She reached 5'1 however she has thyroid problems so her weight is a small problem. She does suffer from her peers. She is very in mature and more like a teenager than an adult. She struggles with managing her life on her own. I wish I could find her a support group of other adults with turner's. Anyone out there have any suggestions?
Robin
Nicole, My name is Robin I am a 31 year old woman. I was diagnosed at birth with Turners Syndrome. I can tell you from my experience that I am a happy and healthy well adjusted young woman and there are many of us out there. I encourage you to contact the National Turners Syndrome Society of the United States . You will find that things are not what they seem at first and that your niece will grow to be a happy and beautiful little girl. Please feel free to contact me any time.
Nicole
My sister is 17 weeks pregnant. I went with her yesterday to see a maternal/fetal specialist & it was determined that the baby has Turners Syndrome. I can't believe this, I have never even heard of this before. We are all in such a confused & unbelievable state right now. According to the doctor the baby isn't going to survive. Its heart is underdeveloped, has only 3 chambers, when there should be four, the stomach has fluid, and there are cysts on the babies neck. I can't believe this is happening. Her only choice is to terminate her pregnancy. Per the doctor, she can't carry the baby up to the ninth month since the heart is so weak & would be delivered still born. This is all just so unfair.
Kelsey
Hi my name is Kelsey and I am a sixteen year old girl with turners syndrome. I had a normal childhood. I have three nephews and according to my family I was the same as them. I was just a normal kid. I am only 4'9' but that's ok. I have no heart problems. A little health problems. But I have a normal life. So for all of you that are afraid that there is no chance your kid can lead a normal life with turners syndrome it's not true. There is a great chance that they can.
Hope
My sister had my niece on July 19, 2005 . A few days after her birth we noticed her feet and hands were swollen. The pediatricians took blood work and confirmed she had turners syndrome. At about two months she under went open heart surgery. She is still healing today. I pray every day she'll be ok. God bless everyone who has to go through this.
Krista
Hi, When I was young I was very tiny. My mum was concerned so for a long time she questioned my doctor but his response was, "What would you do if she was too tall?" Finally he referred me to a specialist and I was diagnosed at age 12 with mosaic Turners Syndrome. Unlike most girls with this syndrome, I am only missing 1/2 of my x chromosome. I am 5'2, had problems with hearing when I was younger, have a heart murmur and hate math. I'm 18 years old and am currently in my first year of university and absolutely loving it. Everyone who I have ever told about TS is shocked and said wow! I can't believe it. I have an amazing family who are always there for me. I wish you all the best of luck.
Bernadine Williams
My daughter Katie has turners syndrome. She is 5 years old and was born at 33 weeks due to turners but nothing holds Katie back. She goes to school and has loads of friends. She is learning French and goes to ballet and when she is older she wants to be a pop star. Katie is having her 6th operation in a couple of weeks but she has told me that the doctors will fix her heart which will be great. Life is great and i would not change anything. Katie and I are a real team.
Yvonne
I have a wonderful 4 year old with Turners Syndrome. She is our first child. She is very smart, outgoing, beautiful, and friendly. You would never know she has Turner's Syndrome unless I told you. She was diagnosed in pregnancy and had (heart surgery) an aortic coarctation repair when 3 days old. She was born at 37 weeks. She lives a very normal life and is very smart. I have never had a problem teaching her anything. She has a great memory and we as parents lean on her sometimes when trying to remember things or a name. We would have never terminated our pregnancy no matter what the outcome of the amniocentesis, even if it would have been an outcome with downs syndrome. We were so glad we had an amniocentesis done so the doctors would know what to look for at birth. Also, so we could prepare ourselves physically and emotionally what we may go through. I am not sure the doctors would have known to look for the aortic coarctation at birth. God gives us these little angels because he knows we are the best people to be entrusted with their care and hearts. Boy do I feel blessed with this child.
One thing to tell people that are new Parents of these special girls is that there may or may not be some trials. I was on bed rest due to low amniotic fluid for about a month before she was born. She had(heart surgery)an aortic coarctation repair at 3 days old. She was born at 37 weeks. She did not have a very big appetite the first few years and was a challenge to feed. I've been told this was because of her high palate. I did nurse her for a year though to give her the best start. (Even though this was trying at the beginning) She did not have many ear infections-contrary to what I was told to expect. Last week (Oct '05) she had eye muscle surgery to straighten a lazy eye. She does not have any kidney problems and her heart is doing just great according to her cardiologist. Every one will have a different story to tell. Just try your best and always keep your daughters feelings and health in mind.
She has a sister that is one year old and they get along better than any two sisters I have seen. (The one year old does not have any genetic disorders.) I hope that they can lean on each other through thick and thin and continue to be close.
It does hurt to see your child deal with some things that other children do not deal with. Sometimes tears are shed in our home for any pain she has or has had to endure. But she is brave, strong and gifted. She and God show us the way and give us strength.
Remember-there is nothing you did to give your child Turner's Syndrome. Even seemingly healthy people sometimes have different surgeries and go through things in life. My husband has had heart surgery for a leaky bicuspid valve at age 28 and is and always was one of the healthiest people I know. He did not even know about the heart problem until about age 25. (Very athletic and in shape and no family history of this heart condition and no genetic disorders) The surgery was done about a month before our first daughter was born. The day before she was born he went in for a second surgery due to complications from the first surgery. You never know what is going to happen in life-but your faith and your loved ones will help get you through the tough times.
I am sorry to hear from a few people that had written that they had lost an unborn baby due to Turner's syndrome. - my advice is to keep your chin up. We have had 2 miscarriages ourselves and yes it is so hard to loose those precious gifts. You are in my prayers.
Laura
I had a miscarriage at 9 1/2 wks. I had D&C 2 weeks ago and today found out that we would have had a little girl with Turners syndrome. It is so hard to deal with yet and I don't wish this pain on anyone. My question is does anyone know what my chances are of having this happen again with my next pregnancy? Thank you for any help. Laura
Mirsada
I am the mother of a 14 month old when she was born she was diagnosed with TS. I should have known right away after I gave birth when my doctor kept on looking at her with a weird look. I didn't know why at the time, except for later that night the doctors came and told me she has TS. It broke my heart to call back all my family and tell them the news. She had heart surgery shortly after. She has many issues she has to overcome and you wonder how I am going to do it. How am I going to help her when the information you find out is too much to handle. We started her on growth hormones about 6 months ago and it is not easy. Everyday I wonder is she going to hate us for doing this or will she hate us for not doing it to her? No matter how hard it is everyday to deal with everything, you know it's worth while when she looks up to you with the look of love she feels for you. You should only be strong for her and proud because she needs you to be. Best of luck to all of you. Mirsada
Joanne
Hi, my name is Joanne. During my first pregnancy, I found out at my first ultrasound that my baby had problems and wouldn't survive past 20 weeks. The doctors were right. At 20 weeks, I delivered my stillborn daughter. I was completely devastated, depressed and felt inadequate and a failure. Several weeks later my husband and I found out that our daughter, who we named Jewel, had had Turners Syndrome and her heart stopped beating from various complications resulting from it.
I know how so many people feel and even though it has been almost two years since her passing, I think of her constantly. The mourning and pain never entirely disappears, it's always a part of you. It just becomes more bearable as time goes by. But I write this to provide some support and sense of hope.
The doctors and specialists that helped my husband and me through our loss were excellent and extraordinary with providing information and counseling. Two months after we lost Jewel, I found myself pregnant again. Even though I was worried and scared to death during my entire pregnancy, our son arrived safe, healthy and beautiful. He will be turning two very soon.
You never forget the one you lose - the one who was only part of your life for a brief moment in time. Instead they are engraved forever in your mind and heart your whole life through. No matter how hard it seems right now, remember as you wipe away your tears, the reasons you loved and wanted the one you lost. Use it to build the strength you need and inspire hope to move forward.
Kalismom6
Hi, My 18 year old sister was diagnosed with Turner Syndrome at birth. When she was born the physical signs were there; even some they had never seen before. When she was very young she had surgery to correct the defect of being born with male external organs. She started hormone shots at about 13 and had the surgery to remove the extra webbing on her neck. She continued with the shots for 5 years and has currently stopped them and is now taking estrogen pills to induce menstruation. On top of all of this she was diagnosed with degenerative bone disease at approx.10 also. Both hips had to be remodeled and she was in a cast from feet to hips with a bar between her legs. But through all this she has only grown stronger.
Everyone in our small home town has known her whole life and just adores her. She does volunteer work for the ece program at her school. She is in drama club and carries very envious grades. She also cheerleads and is on the float committee. Though in some ways she is different in level of social skills but most often than not, in some ways she surpasses the most kids her age when it comes to learned information such as politics, Harry potter, Titanic, you name it she knows it from famous celebs to famous writers and poets. God has truly blessed so many people through my sister. She has shown people in my town that things aren't always what they seem and the understanding of accepting people of all types not just the typical ones.
Hannah
I found out at 23 weeks of my pregnancy that my little girl had a nuchal fold thickness on her neck. They told me that she could have Down syndrome. After meeting with several doctors they said she was fine. In my heart I knew that there was something wrong with her. I was induced at 42 weeks and my labor was horrible. After 22 hours I had an emergency c-section. When Hannah was born she had very swollen hands and feet. Her ears were also different. One week later she was diagnosed with Turners. Everyone worried about me, but I was fine. Especially reading about the high miscarriage rate of girls with Turners. As far as I was concerned she was a gift from god. Her kidneys are perfect, but at six weeks old she had open heart surgery for a coarctation of the aorta, which is common, she also has a bicuspid valve. She is now five months old. I could not have asked for a better baby. Her road in life may be difficult, but she is strong and will make it.
Jeff
My wife and I have a Turners girl. There was a question whether she would be Turners or Mongoloid because of the extra skin on her neck. Big deal. We weren't turning away any of God's gifts. She is now 5½ years old and a total bundle of fun. Definitely a "keeper." Some 28 years ago I encounter Turner's syndrome in my studies in College so I wasn't in the dark as to this anomaly. Secretly, I suspect my girlfriend at the time was a Turner's but she would never talk about it. She did have ALL the symptoms. My advice to everyone at this point, give them a lot of love just like other kids. Do pay attention to ear problems, as this can cause problems in speech if not tackled early. Her bicuspid aortic valve is normal in these kids, maybe one day it will need modification, however, for now it needs monitoring to make sure there is no problem.
Kim
My name is Kim. I am 25 years old with Turners living in South Australia . I have been diagnosed when a small child. I have achieved a degree in social work, working in the field of aged care and disabilities. My concerns are that in having a syndrome such as Turners it can be stereotyped i.e. Turners girls have intellectual impairments, physically based abnormalities. Even doctors can stereotype you as not appearing to 'look like you have Turners', what do we look like exactly. My message is to parents and particularly girls and young adults with Turners consider yourself normal, receive appropriate medical advice but don't label yourself as Turners as it will only limit your self perception.
Victoria
I have read all of these experiences and have felt like I should share mine. I am 31 and have TS. I did not find out until I was 15. I was then placed on growth hormones and that was where my treatment began. I am luck because I don't have a heart problem or kidney problems that I know of. I feel like a normal healthy adult with minor problems that I see a specialist for TS for at the University of Utah Hospital. I have learned a lot about this disease. If anyone out there has been told that their unborn child will not live please see a specialist about the disease so you can make an informed decision of what to do. The only hard thing I have had to worry about by having TS is when I met the specialist and having been explained why I won't be able to have children and what TS is all about. This makes me sad and sometimes I feel like I am a "freak of nature" because no one really knows why this happens. Anyway, I guess I just want to say if any of you reading this are face with a child who may be diagnosed with Turner's please don't give up and seek out treatment from a specialist. Dr. Kirtly Jones is a woman I would recommend you get in contact with if you have questions about this disease. She is located in the University of Utah Hospital. Good Luck with all your trials and searching and keep a positive attitude.
Alisabeth Pender
I am a 19 year old girl with Turners'. I was diagnosed at birth. My mother sat me down and explained to me when I was 9 what Turners' was. I am 5ft tall and am a completely normal girl. I work, go to school and hang out with my friends just like anybody else would. To any mother out there who is finding out that their little girl has Turners' there is nothing to be scared of. So what if I am short, good things come in small packages :) There are people that don't have turner's that are shorter than me. I did have to take the growth hormone shot from the time I was 9 until the time I was 13 when I started my period ( on my own I might add with no estrogen help) and now I am taking the estrogen patch. Thankfully I have done everything that the doctors said I wouldn't do. I have developed breast (very blessed in that area I might add). It’s in the lord's hand and remember God never gives anybody anything they can't handle. A girl with Turners' lives a very normal routine life. The only way Turner's affects my everyday living is that fact that I AM SHORT. But that’s ok. It could be worse in my opinion
Kim
My name is Kim. I am 25 years old with Turner’s syndrome living in South Australia. I have been
diagnosed when I was a small child. I have achieved a degree in social work, working in the field
of aged care and disabilities.
My concerns are that in having a syndrome such as Turners it can be stereotyped i.e. “Turner’s
girls have intellectual impairments, physically based abnormalities”!! Even doctors can stereotype
you as not appearing to 'look like you have Turners'; What do we look like exactly?
My message is to parents and particularly girls and young adults with Turners. Consider yourself
normal, receive appropriate medical advice but don't label yourself as Turners as it will only limit
your self perception.
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