A friend noticed that our 18 month daughter Katie had one leg fatter than the other. She was embarassed to point it out but we were so glad she did! Six months later Katie had an ultrasound scan and was diagnosed with bilateral Wilms tumours. This rather eclipsed the hemi diagnosis. Katie had surgery and chemotherapy and five years on she is well.
The chemo. affected Katie's walking and it was at this point the hemi got more attention. Her LLD was 2 centimetres at this stage and it has since decreased to 1.5cm and increased up to 2.5cm where it is now. Katie has had a lift inserted in the sole of her shoe when her LLD has been 2cm or above. She has no mobility problems and manages fine without the lift when necessary, e.g. when wearing her ballet shoes. Her hemi is also evident in her hands and sometimes face.
When Katie was 4 she was diagnosed with Beckwith-Wiedemman Syndrome.
At the same time her two year old sister Carys was also diagnosed with BWS. Hemi was not evident at this stage, and although I tried not to be paranoid about it, I did keep an eye on her, looking for hemi. However, it was Katie that spotted Carys' hemi, when Carys was almost 4. This has since been confirmed by a geneticist. Carys' LLD has never been as large as Katie's.
We also have a son Callum, now aged 2 years 5 months. Last year when we saw the geneticist she checked him over thoroughly also, and she found that he has a girth difference between his legs. He has not officially been diagnosed with BWS but it seems to me that he has enough symptoms.
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My name is Emily. My husband and I have one child, her name is Tessa. She will be 2 years old in April. Tessa has isolated Hemihypertrophy of the right side. At birth her LLD was 1.5cm and today it is 2.5cm. She has stayed at 2.5cm for about a year now. Tessa is just like any other toddler, she plays, runs, jumps, and loves to dance.
She got her first lift at about 14 months old (2.5cm) she has done wonderful with it. We plan to have another child sometime next year (hopefully). I worry that our next child will also have Hemi. But if he or she does it is just something we will have to deal with. Hemihypertrophy is no reason to not have more children. We have learned with Tessa that it really isn't all that big of deal, difficult at times (finding shoes, Dr. appts ect..) But over all she is a very happy normal child.
I think that I have Hemi of the left side, but this has not been confirmed, and only I can see it. Tessa’s LLD was noticeable at birth but she was not diagnosed with hemihypertrophy until we seen the geneticist (she was one month old) we were told at birth that her legs would even out that because she was breech she did not have enough room to grow properly.
Tessa has AFP testing and Ultrasounds every 3 months. She sees her orthopedic doctor and her geneticist at every 6 months. Tessa will have the surgery to slow the growth of her right leg when she is older. Shriners monitors her growth rate so that they will know the best time to do the surgery. They have said that she will probably be 9 or 10 years old when they do it.
We would love to answer any questions that anyone has for us. If you are new to this I know what you are going through, but soon you will see that everything will be ok. Just enjoy your wonderful child and email the group for support or any questions you may have. The Yahoo group has been a big part of my life since 2006. Any time the doctor said something that I did not understand there has always been someone to help. So please join our group for support.
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My name is Tanya and when my son Gavin was born in September of '07, we were thrilled to bits. At 6 weeks old we noticed one arm seemed slightly larger than the other. We feared it was swelling and that maybe our three year old had done something to hurt him by accident. After 7 hours of testing/x-rays in the ER, we were sent home and told to follow up with our pediatrician for a possible genetics referral. We were still hoping that it was swelling, so we had his arm ultrasounded.
The pediatrician also ordered a kidney ultrasound. We waited 2 days for the results and found out that his right kidney was larger than the left and that his right arm was not swollen but just bigger in girth. We were referred to genetics and after thorough examination, we found that his whole right side from shoulder to toes are larger and he has length discrepancies on this arm and leg length.
His right kidney is now 7.6cm larger than the left. The girth difference is larger now than before and is more noticeable to others. However, our son is happy, smiles often, is a snuggle bug and all ready advanced for his age. He tolerates the frequent screenings well and our household is no longer as stressful when it comes time to wait for results. We will deal with what could come, when or if it happens. He is currently still under care of the genetics department as they are watching him to make sure the hemihypertrophy is not the result of some other syndrome that does not show symptoms until later in life. But likely it is isolated hemi.
For new families coming to this site, we are happy you can find this info in one place. Each of us who helped build this site, knew nothing when we first heard of it and joined a yahoo group formed by Pam. We got together to create this site to help new families find answers from those that live with hemi every day.
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Ellayna was born July 20 2004 after a very complicated pregnancy. After several weeks of making many trips to the hospital to stop contractions, her doctor finally pushed for an ultra-sound to see why the mothers body was trying so hard to get this baby out. It was a small community regional hospital with limited facilities and the doctor had voiced his concern for a reliable image from their tech. After the appointment with the U/S he ordered a immediate transfer to the larger Dayton Miami Valley Hospital in Dayton Ohio for an emergency surgery and C-section. He noted a large volume of fluid in the baby's chest during the U/S and also noted this was causing distress for the baby.
It was a 45 minute drive to Dayton and then another hour wait until Ellayna’s father came to the waiting room in stunned silence, not the joyful smiles of a new father. It was there that he told the family about Ellayna’s condition. She had been born 6lbs 8 ounces and had almost 7ounces of fluid in her chest. Her left lung was collapsed and her heart was pushed to the right side of her little body. Her left leg was up behind her head and had to be tied down by her side to keep it from returning to her head. Her left leg was also extremely larger than the right one. She has “weird” markings all over too, he said, but we figured that was just him being a new father having never seen a newborn before. Little did we know he would be right in her markings not being right.
Her apgar score was 1 and we were told to brace for the worst by the doctors and nurses. We were taken one by one into the N.I.C.U. by her father to meet her. On first sight of her it was obvious there were issues way beyond anything we had imagined. Her markings covered 80% of her body and seemed very red and patchy at best. She lay there very quiet and still. It broke our hearts.
She spent 36 days in the N.I.C.U. until she was released. She was seldom alone, as family were allowed two at a time with her and we rotated almost continually for the whole time. It would be decided there, by visiting specialist from Cincinnati Children’s Hospital, that she had Klippel Trenauney Weber Syndrome and Complex Hemihypertrophy. A year later after her Port Wine Stains almost had faded away they changed her KTWS to Cutis Marmorata Telangiectatica Congenita and after starting the screenings for Wilms tumors they decided to call her Hemi Crossed Complex as well, since she has organs oversized on both sides of her body. Brain MRI’s and MRA’s have confirmed that she has hemangioma’s on her brain and throughout her skull. It was also discovered that she has a stage 1 Chiari malformation during these scans.
At two and a half years old they added Proteus syndrome to her diagnosis while she was in The Netherlands being evaluated for her CMTC by a world wide organization there. We learned that it could be either the CMTC or Proteus that has caused the Hemi as both are known causes.
She is three and a half years old at the time of this writing and she is about as normal as any other child her age, just looks a little different and limps a little. Her LLD is now at almost 3 inches or 7.6 cm and she does have AFO’s to brace her right foot because of the bigger lift and possible harm to a twisted ankle. Her left leg girth difference is about 15 inches bigger around than the right side. Although mobile most of the time unaided, she does have a wheel chair for taking longer trips such as full days at the hospital for tests, or shopping. She is in dance class taking ballet and she also has a miniature horse “Breezy” in which she takes equine therapy. She teases the girls and flirts with the boys like any little girl does. She see’s 14 different doctors now at The Cleveland clinic for her multi-syndrome condition. She has nursing care for 7 hours a day 5 days a week and 3 hours each the other 2 days. They monitor her everyday vitals and administer her medications throughout the day. Please visit her web site through the “Members Links” page and be sure and visit the other very special friends with links there.
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My name is Renee and my daughter Sarah was diagnosed
with full left side hemi when she was 3 months old by
her pediatrician. I had noticed that her left leg was
larger but it wasn't until I told the doctor she told
me why. Sarah is now 5 years old. She is an amazing
child. Along with the hemi she has several other
issues. The hardest part of all the testing is the
blood work. Everytime we walk into the lab she starts
to cry. She is a very smart young lady. Nothing gets
in her way
At first after the diagnosis, I was very upset and
wondered what I had done. I have three other children
that have no health problems. I had a very difficult
pregnancy with Sarah with multiple issues. After the
first few months, I began to realize that yes there is
going to be trials along the way but I was blessed
with a beautiful daughter and to sit and just worry
about what ifs was not productive. I have learned
that through her strength it has made me a stronger
person. I can handle anything that comes at me. I am
not saying it is not hard but I am a better mother for
it.
Sarah has had 8 surgeries since her birth (all not
related to Hemi) and everytime amazes me with her
strong will. Nothing gets her down or in her way. I
believe that God does not give us more than we can
handle. Sometime I just wish he didn't give me such
broad shoulders to carry the load.
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Our son Isaac was born at 31 weeks. He was not breathing when he was born and was immediately put on a ventilator. The doctors suspected he had an umbilical hernia (omphalocele), and he was rushed the nearest children's hospital, three hours away. Within a few days, the neonatalogist was talking about Beckwith-Wiedemann Syndrome. As we learned more about this syndrome, we read about the possibility of hemihypertrophy along with BWS. We watched his hands and feet, and did notice a difference. After 7 weeks, he was discharged from the hospital, still on oxygen, an apnea monitor, and a feeding tube.
As Isaac grew, the difference in his left side became more noticeable. His entire left side from head to toe was (and is) larger. When he began to pull up and cruise, we bought him a shoe with a lift. He is now 3.5 years old, and still wears the lift on his right shoe; it is almost 2 inches. He runs, jumps, hops, and plays with his siblings, barefoot or with his shoes on. We monitor his leg length discrepancy (LLD) every year with an orthopedic surgeon, and plan to have surgery to correct the LLD sometime in early adolescence. We also have complete abdominal ultrasounds every three months to check for Wilm's tumor, and an AFP blood draw every six weeks to check for a hepatoblastoma, since children with hemihypertrophy are at an increased risk for these cancers.
Isaac is a joy. He is a blessing to us and his siblings, and we cannot imagine our family without him. While he has some hurdles to overcome, we believe that he will lead a normal life. We are so thankful to be his parents.
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My name is Lisa. My husband and I live in Virginia with our three children,
Hunter (12) Kirsten (9) and Van (10 months). I am writing this story on March 8th 2008, The reason I add the date is because our son Van's condition seems to evolve with time.
Van was born on May 2nd 2007. When he was born, they noticed his left leg arm back and other areas where marked a deep dark purple with indention in the skin especially on the left leg. I got to hold Van for about 2 min when they wisked him away. They were concerned that he was having a circulation problem and that the umbilical cord had strangulated his leg. This wasn't the case.
I was moved to the regular nursery awaiting Van. Doctors still couldn't put their finger on what exactly the purple spider looking veins were. But another problem was surfacing. Van was unable to eat or hold down food. He had a stomach blockage. On day two he was moved to the NICU, where there a specialist came in and told us he had a rare condition called Cutis Marmorata Telangiectatica Congenita (CMTC) commonly called 'Van Lohuizen syndrome'. This was the cause of his purplish birthmarks, and also contributed to atrophy in the intestines causing him not to pass stool and was diagnosed with Meconium plug syndrome.
At around 6 months of age, we noticed Van had a difference in the size of his legs and feet in girth. We were referred to an orthopedic surgeon who then informed us that Van had Hemihypertrophy. His LLD was 1.5 cm and we were told to follow up at 12 months or when he started walking whichever was first.
We began the every 3 month ultrasounds for abdominal cancer and the AFP test. To date the only thing that has been found in that area is a larger left kidney of abnormal shape and smaller left intestines.
Van also has a condition in the left eye called Marcus Gunn Phenom. At this point it is very mild an requires no treatment.
Recently Van has gotten a Barium enema test that showed his left intestines are growing which is great news, but the intestine aren't properly pushing the stool. Doctors have recommended Milk of Magnesia twice a day which seems to be helping him pass stool.
He also has received an MRI of the Brain with and without contrast. Which showed some vascular anomilies, and atrophy of the left side of the brain. The neurosurgeon said that both were very mild. so that is great news.
At 10 months van is very verbal and seems to be mentally on target. He is a master at the army crawl and seems to have no interest to get on his knees and crawl. He has begun to pull up on objects like the crib and coffee table. But has trouble staying flat footed and seems to pose him a bit of trouble with stepping. The doctors and I are hoping that it will resolve itself in time. He will see the orthopedic in May for a possible shoe lift.
Thank you for allowing us to share our story.
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My name is April, I am mommy to Cameron who has just been diagnosed with left side hemi. Cameron was born September 3rd 2007. We noticed Cameron's arm December 24th 2007 while at a family gathering. I was holding him and someone pointed out his left arm was larger. I was immediately worried and after everyone's input we thought he may have had an allergic reaction to something, so went to walgreens for Benedryl. Nothing happend.
We took him to the Dr. the day after Christmas and they sent us to get x-rays. They came back and noted possible fractures, so I began to get really scared. I have 3 children Collin is 4 and Connor the middle is 2 and Cameron is the baby. My first thought was.... did one of my kids accidentally sit on his arm? Went to the Orthopedic Dr. and he could not find any fractures. I was puzzled! What is wrong?
Took him to Children's hospital and they thought maybe it was Lymphatic, so they did an ultrasound in the swollen arm and ruled that out. They said there was no blockage. All the while I have been doing my own research and between something Lymphatic or Hemi I knew it had to be one or the other. Well, at that point that left Hemi.
Finally, yet another doctor, pretty much the only one that seemed to know right away what we were dealing with, diagnosed him with hemi. He was very matter of fact about it and told me about the routine ultrasounds and we would take it from there. The bad new is this Dr. flys from Chicago to Seattle to Yakima (where we live) so he really is not someone I can count on for care.
All this news was so much to take in! The crazy thing is that my research told me he had Hemi way before any doctor did. I am finding myself to be Cameron's advocate becasue the doctors don't seem to know anything about this. His first ultrasound came back ok, thankfully. I have told myself that we will take this day by day and since he is so happy, I will stay happy too!!!! From all the information on this site I am finding it a lot easier to take this to the next step. Thank's for doing this website, it's very well done! Thank you, thank you, thank you!!!!!
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I was diagnosed with Hemi at the age of 6 months. I am now 43 years old. My pediatrician told my parents we would find out who the doctor was who knew what to do.
At that time he found two doctors, one in London, the other in Houston. We live in Texas, so this was a no brainer. For 11 years I went faithfully to Houston every summer and then the last 2 years every 6 months. They did x-rays to plot the growth of my left side which is the larger side.
At the age of 11, two days after Christmas I went to Houston for surgery. The surgery was developed for Polio patients where you go into the leg of the larger side and turn it to stop the growth. I was in the hospital for about a week. I came home and then went back for a follow up in which the surgery was deemed succesful.
I have to say to this day I have never had any problems associated with this condition and I consider myself extremely lucky. While I will never be perfectly "matched" on the different sides of my body, the only lasting effect I have at this time is my left shoe is a little tighter, my left leg muscles a little bigger and my pants fit a little snugger on my left side. I also can't wear boots that go up to your knee, the doctors told my parents that the muscles in the left leg would go down, but they didn't so because of that it's too tight to wear shoes like boots. Other than that, I'm great.
If anyone wants to talk about this condition or my story, feel free to
respond at pkh6965@hotmail.com
Pam
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My name is Cathy and I'm 43 years old soon. I was diagnosed with Hemihypertrophy when I was young, but we lived in country Victoria and no one seemed to know what is was.
When I was 8 we moved from country Victoria to Melbourne. It was suggested my mother take me to the Children's Hospital because someone there would surely know what it was. It has affected my face, jaw, tongue, teeth, etc. Every 6 months we'd go to the Childrens Hospital and spend the day there having all sorts of xrays and tests. I had a few little operations along the way (mainly tooth removal, tissue removal).
Then when I was 18 I had a facial reconstruction which took 8 hours, but boy did it change the way I looked at myself. Then just before my 30th birthday, I went back to see the plastic surgeon I'd seen since I was 16 and bought up a concern that my face was more "full" on the left side. He suggested I see a Maxiofacial specialist.
Well the bone had started growing in my jaw and nearly 13 years on has not stopped. I have had surgery almost every year since. They are trying to find ways to stop the bone growing but to date nothing can be done.
I would like to hear from anyone who has been affected by this condition on their face, especially adults. It was amazing reading all your stories and how "Unique" the condition can be. Good luck to all your children and I'm sure like me they will have a wonderful childhood regardless. It's great to have sites like this now, I'd hate to think what my mother went through, because she has never known anyone else with this condition-ever!
If you wish to contact me I'm at coolvalentinos@optusnet.com.au
Cathy
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Hi, my name is Angela. Scott my husband and myself have two daughters Shannon and Eloise. Shannon is coming up to her 10th birthday. She was born 7 weeks early with an ASD and a narrow valve in her heart both of which thankfully self-repaired.
She soon became a bonny baby above the 75th centile on both weight and height, it was then that our health visitor referred us when she noticed that one leg had fat creases whilst the other had none. Relatively quickly she was diagnose with hemi-hypertrophy and having regular checkups at an orthopeadic hospital and regular scans on her kidneys.
Meanwhile each milestone Shannon reached she appeared to struggle on one side ie-could not hold her head up properly like her neck muscles one side were weak, we put all this down to being premature and took her to a cranial osteopath to assist with crawling, sitting etc.... this appeared to work wonders.
Shannon has also had consistent hearing problems and fluid in the ear (glue ear) which we are now waiting for an operation date for gromets. Up and till very recently Shannon has thrived, she knows one hand is bigger and that she needs different size shoes but otherwise has been unaffected by this...recently she even did a 55ft aerial adventure course...a very plucky kid!
But thanks to this site and yahoo I have found out that most of the things Shannon has suffered are linked to hemi-hypertrophy and consequently have written to my consultant who has referred her to a specialist re 'Beckwithe Weideman Syndrome'.
Unfortunately in the last month or two Shannon has been suffering with cramps and stitches..I am hoping this is due to a delay with her new shoe inserts..but we are also due an appointment re possible levelling her 2.5cm discrepency.
These sites for me have been a godsend because it is easy to feel so alone and frustrated when I can't answer her questions about her body and condition...GP's have never heard of it ..as is the case with most people! I look forward to following everyone elses stories and supporting one another.
UPDATE Its been a year or so since our last hospital appointments. This time we were given much more information and advised that she will definately be having an operation regarding her leg discrepency next year, this I have been told will be keyhole and will stop the growth in one knee for the other leg to catch up. The success though is unguaranteed, but there is a second much bigger operation she could then have if the first does not help. I would welcome any advise from anyone who has had this done?? hookerangela@hotmail.com
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Hi. My name is Terra and I am a mother of two (going on three in September). When my second child was born I loved picking on his chubby legs and arms. I love my children so much that I never noticed that one side was chubbier than the other. However, as he began moving around I noticed that one leg was thinning and the other was not.
At 9 months Justin was walking and by his first birthday he was a pro. At 14 months he began falling and limping so I took him to his pediatrician. They said he was toddling but I insisted that he was past toddling as he was walking fine on his first birthday. They had x-rays done and found nothing. But after two months of this they referred him to a Orthopedic doctor who casted his leg just in case there was a small fracture that they couldn't see.
Cancer of the bones were ruled out due to his fathers family history. When the cast came off it was obvious that one leg was bigger than the other but the Orthopedist said it was because of the one leg being casted. 6 months later I performed my own measurements of Justins legs the day before his follow up appointment with the Orthopedics. They ordered a bone measurement test and discovered that one leg was slightly longer than the other and one foot was a good bit longer than the other. I pointed out that they were also bigger in circumference and she said that she would keep an eye on it to make a follow up appt. in 6 months.
It is 6 months later now. We went to the doctors this morning. Last week Justin hurt his hand or so I though because it was swollen. It turns out he just dislocated his elbow and the swelling is just one arm bigger than the other. She also noticed that his face looked like it may also be a little bigger. She said it may be a mild case of hemihypertrophy. Nothing to worry about but she referred him to a geneticist to confirm the diagnosis and if he has it he will need to be checked for tumors in his belly but only as a precautionary method.
I had the checkout lady write down hemihypertrophy for me so I could do some research. After researching all afternoon I am sure that this is what he has and I am hoping that it stays a mild case and that no cancer shows up ever. I will be insisting on him seeing every type of doctor he needs to see and making sure that every doctor in the future know that he has been diagnosed with this so that they don't put me off as being an over reactive mother like they have this whole past year.
This is all new to me. When I looked up one leg longer than the other I couldn't find any sites about the problem but when I had an actual name for the problem it was easy to to find sites. I think it would be nice to have a link to this sight for when parents look up the symptoms instead of the actual diagnosis this would help parents aid in the diagnosis of the problem earlier.
Terra
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I am eighteen years old, and I've had hemihypertrophy since birth. I looked around your website for a bit, and I was intrigued by the "Our Stories" section of your website. I believe all the parents of these young children should be truly grateful. Their children have been diagnosed at a very young age, and will most likely grow up to have a normal life, with proper treatments.
My story wasn't the same, at birth they noticed my face was asymmetrical, but the doctors said that it was no cause of worry, and that every child’s face doesn't line up perfectly. From the age of eight, I had severe knee, hip, and back pain. By the time my hemi was diagnosed, I was 4cm uneven.
In Toronto, my family struggled to find the most appropriate doctor for this syndrome, and it would take three years before I found a hemihypertrophy specialist.
To the parents of the website, you are truly blessed. My mother has lived to see her child suffer in hospital, and at the age of eighteen, I have just received my second epiphysiodesis surgery, while having several jaw and mouth reconstructions. Unlike the website says, at least for me, these surgeries are not as simple as they seem. I have had six two inch staple put into the growth plates of my left leg since I was twelve, and until I was sixteen, they staple would frequently tear at muscle tissue, and create bruising. I grew up with lifts, back braces, and knee braces. I am now currently recovering from my last surgery, and have been unable to walk for a month, and am currently learning the basics of walking again.
On the brighter side, my surgeon timed my surgery perfectly, I now only have a 1cm difference between my legs, and despite the fact that my only form of transportation is a cane, I've become used to the hospital as my second home. I am now finished growing, and the only noticeable discrepancy is that I have scars all over my left leg, and that my right femur is drastically longer then my left.
My surgeon told me that, hemihypertrophy is most likely to occur, or be noticeable in tall people, considering I was suppose to be 6’0” , it makes sense, but I’m only 5’9” now after treatment.
Growing up with hemi, I’ve become accustom to the terms, procedures, and life style. If you have any questions, feel free to email me at bishopkelsey@hotmail.com
The best of luck with your journeys, and the support group is a beautiful site.
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My daughter Meaghan was born 6/21/84. She is now 25 years old .She has
left side hemi. Her pediatrician told me shortly after birth one side
was larger than the other, one leg longer, etc., but that she would
probably grow out of this.
When we took her for her 2 week check up he told us it was
hemihypertrophy. A few weeks after she was born she began having kidney
infections. She would be on anti-biotics, it would clear up. Then she
would get another kidney infection. After about 3, the pediatrician
suspected she had Wilms Tumour. Ultra sounds were done and fortunately
this was not the case. She had a reflux where her urine was backing
back up into her kidneys. She ended up having surgery on her kidneys
when she was 30 months old.
At the time she was born we were not told anything to do as far as
screenings. I think she had one other ultra sound on her kidneys We
had her to an orthopedic dr when she was a little over 1 year old as she
was not walking without holding on. The dr. told us just to treat her
normally, did not suggest a lift, leg lengthening or anything else.
Personally I think she needs a built up shoe, but she doesn't want to
bother with it. The problem with her kidneys was the only thing she has
experienced and after surgery that took care of it. I don't even know
if it had anything to do with her having hemihypertrophy. Life was
pretty normal until 3 1/2 years ago. She started having seizures when
she did not get enough sleep. She would come in from work, lie down to
take a nap and go into a seizure. She had EEG's, CT scan, MRI and no
cause was found. Her neurologist seems to think it is because one size
of her brain is larger than the other. She is on medication and has not
had one since starting treatment. To me the difference in her left
versus her right side is very noticeable, but there has only been 2
people in all these years mention it. We just never made a big thing
out of it.Until I found this website I had only read of a few other
cases of hemihypertrophy and none of them were in the US.
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My name is Angie, my story is much earlier than most of yours. In 1974 I gave birth to twin girls in London.
I now live in Australia. I had a relatively normal pregnancy and the twins arrived healthy at 6lb.12ozs & 6lb.6 oz.
Shortly after leaving the hospital when I was changing one of twins, I noticed she was bigger on one side,
it was a shock and I called her Father to have a look. He seemed to think it was nothing to be concerned about,
my daughters would have been about 4 weeks old at this time.
I was concerned naturally and every day would check her over to see if there were any changes.
Apart from this she was a fabulous baby, she slept soundly, ate well, rarely cried and had never had any sickness.
At about 5 months I noticed she was getting somewhat larger on one side, from her hip down, and I thought her leg
was slightly longer. I made an appointment at the hospital for her to have a complete check over.
The examining Doctor did notice a slight discrepancy in her and said most likely she would outgrow it. Apart from
that she was a very bright responsive and happy baby for which the Doctor commented on. At about 2 1/2 I took
the twins for a complete medical and it was noticed that my hemi twins leg was slightly longer than the other. Again
I was told this was only very slight and that maybe it would be wise to have her checked out from time to time to
ensure she wasn't developing scoliosis, and possibly she would need an inner support in her shoe when she got
older. Otherwise everything was again fine. I pointed out the discrepancy in the circumferences of her limbs, he
didn't have an answer except to say he didn't feel there was anything serious going on as she she appeared to be a
bright healthy and intelligent little girl, he got that part right!
She had quite a vocabulary and was even starting to read at this early age. She never presented with any health
issues, her motor development was right on target, and intellectually both she and her twin were very advanced,
both reading at 3 1/2 years old. They both had the most beautiful personalities, were interested in everything around
them, delightful in every sense of the word. I couldn't take them out in London without strangers coming up to talk to
them and some even wanting to take their photos.
Anyway time marched on and my hemi twin started to notice something was not right, she would have been about 7 when
she became aware, but didn't appear to have any issues about it. It didn't seem to trouble her in any aspect. No one had
ever picked it up, and even at this stage it was really only noticeable to people who really knew us, family and close friends.
It was when she got into High School the problem arose, someone mentioned something to her about one of her legs being
bigger, I think this was at a swimming session. Anyway from there on in she didn't want to go to swimming classes and
didn't participate in much sport, she was not very sport oriented anyway. However, blessed with having a very high IQ, she
was more focused on the academics without taking it to the extreme. She was a well rounded balanced child. She had what
all her teachers used to call a natural intelligence and she had such a charming personality which is what we focused
on.
I came to Australia when the twins were four and my hemi twin now lives and works in the UK. She is and always has been
extremely independent as has her twin. I am very very proud of them both. My hemi twin has chosen to remain single
and is very career orientated. Her twin sister is married, runs her own business and has a beautiful daughter aged 11.
It was only a few years ago I became aware of what the condition is called. I was googling in all sorts of things to search
and finally that's how I got hemihypertrophy. It's wonderful today that parents have such a good network and support
group. I wish everyone the very best with their hemi children. I feel sure most or all of them will grow up to lead a full
and meaningful lives. Sadly however, there from what I have read are those few children who may develop other
complications before they reach the age of 6 due to or in addition to the hemihypertrophy, it can be a somewhat
complex condition.
It's wonderful that this support group has developed and it's amazing to see how many beautiful children do in fact
have this condition. As I have said, I nor the doctors I went to in the early days had no answers. Just love them, help
them grow strong and confident which basically is what every child needs and deserves. I wish I had access to a group
support organization such as this back in the 70's. The photos are beautiful.
Angie
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Our oldest daughter Kaity was born with hemihypertrophy and we discovered it when she was about 3 months old. It was like
my world had come to an end when we found out. To our knowledge there are still no other cases where we live and we had
to travel 1000 miles to be able to see doctors who could help us.
I wanted to share this at this point because Kaity is 22 years old and is the most beautiful young lady. She is a hair stylist and
has so many friends who never look at her differently even though her right leg is so much different from her left. Although she
has gone through two surgeries on her right leg she is doing amazing. Her first surgery was when she was twelve a
Epiphysiodesis to stop the growth in her larger leg and then at seventeen an osteotomy ( bone graphing and straightening )
because her leg was hyper extending severly. We had to travel the 1000 miles every 6 weeks for 18 months for Kaity's surgery
and follow up appointments. After her second surgery she was not allowed to walk for 3 months and not allowed to weight bare
for almost another 4.True to form for her once she was given the ok she was up and gone.
Kaity amazed her doctors and us by making a womens all star hockey team two months after being told she was allowed to start
walking again. Today nothing holds her back she is skating, skiing and recently took up rock climbing. Do not let anyone tell your
child they can not accomplish whatever they want or do anything that anyone else can do. They are much stronger then we think
they are and most of the time stronger then we will ever be. It is fabulous that there is a site like this for people to go to and
share similar stories.
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