Parenting a Child with Turner Syndrome (Ben Kwan)

1)  How does it feel to be the parent of your child?

My daughter, Caylee, was born with Turner Syndrome. Turner Syndrome exclusively affects females because it is a chromosomal condition in which one of the two X chromosomes is either missing or incomplete. This condition occurs in about 1 in 2000 female births making it one of the most common chromosomal abnormalities. I love my child to death and she has taught me so much by simply being herself. Although most kids in her fifth grade classroom treat her just like any other kid, there are times in which some other kids make fun of her height. Whenever she comes home and tells me about such incidences, it breaks my heart. I frequently meet with her teacher to talk about these issues as well as other issues pertaining to her education. I am proud of all that she has achieved. As she grows older, there will more things she will have to overcome, but I know that it will be possible because of all the strength I have seen in her and all the support that I am giving her.

2)  How is your child developmentally the same or different from other children at the various ages?

Caylee has always been shorter than the other students in her class. This is because one of the characteristics of Turner Syndrome is short stature. This can actually be changed though as she is currently undergoing growth hormone treatments. These treatments will allow her to achieve adult height within the lower range of normal. If left untreated, Caylee’s height may fall somewhere between four feet eight inches and five feet.

Another issue that Caylee faces is the lack of sexual maturation during adolescence. Menstruation and breast and ovary development may be affected. Girls affected with Turner Syndrome have a high chance of experiencing early ovarian failure which will prevent her from developing those secondary sexual characteristics. This can be prevented with estrogen replacement therapy allowing her to develop normally, but it is likely that she will require estrogen from puberty until she reaches menopause.

In addition, hearing loss is common among those affected by Turner Syndrome, so she has been struggling with that as well although we are told that her hearing loss is not as severe others. Caylee’s vision seems to be fine, but eye conditions can be common so we have her eyes checked very often so that if we detect any problems, we can treat it right away.

As for Caylee’s cognitive development, her IQ scores tends to be in the average range. She may have problems with spatial temporal processing, nonverbal memory, and attention due to the Turner Syndrome. This causes her to have some problems with math, sense of direction, manual dexterity, and social skills. But overall, she does fairly well in school and typically has no problems getting along with her classmates. Her best friend, Mira, enjoys helping Caylee out whenever possible, so it’s great knowing that she has support coming from somebody her own age.

3) What professionals/agencies do you deal with?  What services are available to you and your child?

One of the primary agencies we deal with is the Turner Syndrome Society of the United States. Their goal is to raise awareness, promote research, and provide support to families affected by this chromosomal condition. This organization has been very helpful in providing us with the latest news about this condition and I feel that I would be lost without them. They have many peer volunteers who are able to answer any questions we may have about Turner Syndrome. They are also very useful in learning about dealing with specific topics like hormone replacement therapy. One of the best things about the Turner Syndrome Society of the United States is that they have national chapters and support groups available creating a network of friends, families, doctors, and supporters. Through these support groups, we have met many families who have had to go through the same things we have so it has been nice hearing their stories and knowing that we will get through it.

The Magic Foundation has also been another very helpful organization. The focus of this organization is to highlight disorders that affect a child’s normal growth. Although they do not specifically specialize in Turner Syndrome, they do provide much support for families affected by different types of disorders. They have been an invaluable resource for the different types of treatment options that are out there for Caylee.

There are a variety of people that we get assistance from at her school in an effort to make her educational experience the best as possible. The school nurse, physical therapist, and an adapted physical education teacher all work together to meet Caylee’s needs. Also, we’ve had to consult the school psychologist a few times because of Caylee’s social and emotional difficulties.

4)  How did you find out about the above services?

When I first learned that Caylee was diagnosed with Turner Syndrome, the doctors at the hospital were extremely helpful in providing us with the right referrals and resources. The internet was also a very powerful resource which led us to find the above services. Through networking with other families who have been affected by Turner Syndrome, we were able to learn about all the different resources available and the help that can be provided by the schools.

5)  What financial burden, if any, are you experiencing?

Money has been a big issue, and I predict that it will be an even bigger burden in the future. Providing my daughter with the growth hormone treatments to allow her to grow a normal height will be costly. The injections of the growth hormone occurs daily and the cost comes to anywhere between $10,000 and $30,000 per year. Caylee has not yet reached the age of puberty yet so she hasn’t had to start estrogen replacement therapy but when it does begin, it may cost somewhere between $10 and $85 per month, and that is something that Caylee will have to do until she reaches menopause. Our insurance will hopefully cover most of costs, but I have already had some problems with them and even hired an attorney to fight for the right of providing my daughter with what she needs to live a healthy life.

6)  What other information do you want to share?

My whole world revolves around Caylee, and I am always trying to provide her with the best of everything. By giving her all the necessary treatments, there’s no reason she wouldn’t be able to grow up and lead a happy and productive life. Although our family has had our ups and downs, I must say that even our downs can be considered blessings compared to the many other families who have been harder hit with Turner Syndrome. The effects of Turner Syndrome vary greatly from individual to individual. Some may have more severe hearing and vision problems. Heart, thyroid, and kidney problems may occur in some children while others do not have that problem at all. We must carefully monitor Caylee’s health to make sure that nothing sneaks up on us and that she will continue to be the happy and carefree kid that she deserves to be.

Ben Kwan's Glogster Link for Turner Syndrome