Turner Syndrome Awareness!

Butterflies are the symbol of HOPE for TS!

Avery and Turner Syndrome


Avery was diagnosed with TS before birth through an amniocentesis. She had a large cystic hygroma, which was supposed to prevent her from surviving, but it didn't. Because of her hygroma, Avery has a small, fatty patch of skin on the back of her neck. Now that she has grown, the patch is less noticeable. She has a low hair line, low-set ears, curved finger and toenails, and wider spaced nipples which are all traits of TS. Avery has cysts on her right kidney, and some kidney reflux, but both kidneys have functioned normally up to this point with no infection. She takes Bactrim, an antibiotic, daily to prevent infection from occurring. Avery was born with congenital heart defects- coarctation of the aorta and bicuspid aortic valve, along with some other complications. Her coarctation was repaired first, at 1 week old, and has been ballooned in the cath lab since. She also had valve replacement surgery at 7 months, to replace the abnormal valve. She takes heart medications, Digoxin-2 doses and Lasix daily.Avery is smaller than the average child. Due to her CHD, she was not on the normal growth scale until recently. Most kids with TS do not decline in growth until age 2. Avery will begin GH therapy in the upcoming summer to help her reach a more average height. She will take injections daily. Most girls with TS that do not take GH are under 5 feet tall. Due to her condition, Avery has gotten the Synagis (RSV) vaccine for the past 2 years. Avery has had no sight problems as of yet, and her hearing has not been affected. Although her hearing hasn't been affected, Avery had tubes placed in her ears to relieve fluid which could cause hearing loss. Many TS girls have problems with ear infections, but so far, Avery has only had 2. Avery sees a regular pediatrician, an opthalmologist, an endocrinologist, an ENT, a cardiologist, a geneticist, and a urologist regularly.

Those are Avery's health facts, but this is who she really is....
Avery is a happy, funny, healthy, smart, loving, beautiful, red-headed, hard-headed, energetic, dramatic, dancing, petite little girl who was created for great things! Her smile will melt your heart. She is a miracle to behold, and she lights up our life. She has strengthened our faith, shown us the meaning of endurance, and given us more happiness than we have ever felt. She is just a normal toddler, exploring, testing, growing and learning. The only difference one may notice is that she is small for her age. She has hit her milestones, and has no physical handicaps that prevent her from doing anything normal.
Avery is so much more than a child with TS, as are all the girls born with this syndrome. She is special, because she is a child of God, formed by His hand...just like every child. While things like daily GH injections, learning difficulties, further heart issues, self-esteem, and infertility seem scary at times, I know that God has her in His hands. He's done an awesome job so far, so who am I not to trust? We are blessed to have amazing doctors and nurses, who are knowledgeable, proactive, and caring. Her geneticist even stated that with all of the medical advances we have now, who knows what they will be able to do by the time she wants to have a child of her own. Avery is expected by everyone, to have a normal, healthy life, and that makes this TS/CHD and just plain old mommy happy beyond words!

Note: Just as every child is different, every child born with TS is different. There are many different ways in which a child can be affected. This is based on our personal circumstances. ♥