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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