If you are reading this handbook right now I can only assume you have just found out you have a child born with a disorder of sex development. I can assure you that I know exactly what you are going through, and I assure you, you are not alone!
My husband and I were living in Hong Kong when we gave birth to our child and were given the news. We felt so alone being so far away from our family and friends and only having each other for comfort while we made arrangements to fly back to the States for all the testing that needed to be done. My husband wanted to keep everything a secret and I wanted to tell the world. Since we had already named our baby girl (we did not find out until the third day that anything was wrong), my husband did not want to even consider the possibility of switching our baby’s gender assignment. He wanted the cosmetic surgery and only let our closest family members know what was going on. Because he felt so embarrassed and ashamed of our daughter’s condition, he bottled all of his emotions up inside and did not want to listen to my doubts about the surgery and my doubts that we might have made the wrong decision raising our child as a female.
Needless to say, that first year was very trying on our relationship. For months I was terrified how my husband would react when I told him that I had decided not to allow the cosmetic surgery on our daughter’s phallus. I was so afraid of how angry he would be that I only allowed myself to tell him the morning of the surgery when it was time for me to sign the consent forms. Surprisingly, my husband handled it better than our surgeon! I did allow the doctors to remove her gonads, and I still wonder whether or not this was the right thing to do.
Our daughter is almost four years old and I am convinced more and more that my daughter will one day announce she is a boy. Because of this I am so thankful that I have not allowed the cosmetic surgery. While my husband is still in denial that my daughter appears to be more male, he nonetheless is supportive of my constant battle with our doctor’s wish to have the surgery.
What advice can I offer you based on my experience? Allow yourself to feel whatever emotion you are experiencing. Go with your gut and do not allow anyone to pressure you into doing something you do not feel is right. Allow your spouse to grieve in whatever way he or she may. It took over a year for my husband to open up and, while I wish he spent the countless hours I spend dealing with support groups and research, I am thankful that he loves our daughter and trusts me to know what is right for our daughter.
The most important piece of advice I can offer is to get involved with a support group immediately. I have learned more from my support group then I have learned from all the doctors combined. Find that support group that deals with your child’s specific condition and do not be afraid to open up with them. You will find these other parents to be your most trusted friends!
Please know that everything you are feeling right now will diminish and there will be days when you will completely forget that your child is different. Of course, as your child grows older, new emotions will emerge and you will face more conflicts. However your love for your child will only grow and you will realize that taking a deep breath and sharing your thoughts and emotions will get you through.
Our daughter Angela was not diagnosed as having a DSD until she was 12 years old. It wasn’t until she reached puberty that I discovered something was definitely not right. I immediately called her pediatrician who asked me to bring in Angela the next day. Upon examining Angela, the doctor also knew her genitalia were not right. She made an appointment for us to go straight to a pediatric endocrinologist without going home. After many tests, the endocrinologist told my husband and me about Angela’s different chromosomal makeup and how Angela would need surgery to make her look “normal.” Within a couple of days, the doctor had already lined up a plastic surgeon at Children’s Memorial Hospital in Chicago.
I had no reason not to believe Angela’s doctor in thinking she had to have this surgery. If I only knew then what I know now, things would have been so different.
Always, always get a second opinion, or ask yourself, “Is this surgery really necessary?” I have since found out this surgery was not necessary and could have waited for Angela to have made that decision herself. It would have saved our whole family a lot of grief and anxiety.
Ana M. Lippert
As a father, I’ve had some issues with my ten year old son’s gender identity. I remind myself that some or all of his behavior may be typical despite his severe hypospadias, undescended testicle, bifid scrotum and possibly other DSD issues he may have. I also recognize that the progesterone my wife took for her IVF pregnancy (in vitro fertilization) may have caused the hypospadias and other issues. It is difficult to understand whether my son is “intersexed” or basically male with hypospadias from progesterone in utero. It is confusing, now, with some gender identity issues, such as that he has opposite-sex playmates only and no interest in sports or rough and tumble. I try to be his same-sex friend and influence, since he doesn’t like to play with other boys—he almost seems to treat other boys the way girls usually treat boys at ten years old; they seem crude and overly rambunctious for his taste. It seems like sexuality is on a spectrum and if his genitals are not fully developed, neither is his gender identity. It seems like they are connected, but I don’t know how.
As the mother of a child who has a mosaic chromosomal karyotype (called either “mixed gonadal dysgenesis” or “mosaic Turner Syndrome”), I know first hand that God does have a sense of humor! Let me tell you this true story. While I was pregnant with Dana, friends would ask if I wanted a girl or a boy. Considering the fact that I already had one of each, I would answer, “I’d like a little girl who took after her big brother (dark eyes and hair and mild mannered), or a little boy who took after his big sister (blond, blue eyed and spunky)!” Well, I got all-of-the-above....and more!
Children with 45,X/46,XY karyotypes aren’t always born with ambiguous genitalia. In fact, I’ve read that most are born looking perfectly male or female and it is only later on, when perhaps they are not growing well or there are other physical signs to indicate a chromosomal disorder, that doctors have even the slightest hint that there is something wrong. There are probably more babies being diagnosed in utero due to amniocentesis than ever before. Although these moms will be presented with way too much information about what could go wrong, most of these same moms will give birth to perfectly healthy boys. I chose to opt out of an amnio because of the high risk of miscarriage associated with the test. Having had a premature infant once already, I didn’t want to take a chance on this one coming too soon. After a difficult pregnancy, with the last three months confined more or less to bed rest, Dana was born.
The doctors who performed my c-section called out in unison “It’s a girl!” And then came an eerie silence. The baby was small, they said, but breathing well. She didn’t really cry right away, but when she did, I thought the tension would ease. A few very long minutes later my husband came over and whispered that Dana was OK, but had some “swelling” in her private area and that they were sending for another pediatrician to take a look. Well, no fewer than nine pediatricians made their way to my room over the next several hours. By mid-day (when we were finally alone) I had a chance to get a good look at her, and promptly asked for a chromosomal analysis. Our primary care doctor assured me that that would not be necessary since she probably had a medical disorder and she would go home with certain medications and we’d go from there. I insisted. Now I’m not saying that I thought Dana was a boy, exactly. It’s just that having a son and daughter at home gave me some prior experience of knowing what they were supposed to look like “down there” and frankly, Dana did not fit the mold!
After several physical examination, the existence of external gonads were ruled out. Blood was drawn and tested for CAH (an endocrine disorder) along with the karyotype. Finally, alone with my baby, I slowly absorbed the fact that it looked as though she had little tiny penis, no scrotum and no vagina! My head swam and my blood pressure rose. It was only after a lengthy ultrasound the next morning, when doctors discovered a teeny-tiny uterus, that I felt comfortable signing the birth certificate confirming her gender.
Two weeks later the blood tests came back: negative for CAH, positive for Turner Syndrome. Dana’s karyotype at the time appeared to be 45,X but the doctor was convinced that she had what they call “a hidden Y” chromosome which caused the genital virilization. Later blood tests confirmed this diagnosis, and then our conversations turned to the long-term implications of Dana’s condition. Not least among them was the risk of a rare cancer called “gonadoblastoma.” This serious risk arises when a person has gonadal dysgenesis, and so the immediate removal of dysgenetic (malformed) gonads is highly recommended. At that point, we were not as concerned with the cosmetic nature of Dana’s problem as we were with her overall general health and well being. An appointment was made with a well-known pediatric urologist. After an exhaustive consultation, a date was set to remove Dana’s internal gonads and permission given to have her external genitalia fashioned to appear more feminine. Only one streak-ovary was discovered during surgery. Seven years later, during a hernia repair, the surgeon found Dana’s “missing gonad”. Thank God it was completely calcified and benign.
The original surgery was not a complete success. Dana, at age 9, does not have an external vagina. In light of all we have learned these last few years, this may or may not be important to her. In fact, when the time is right, she will be fully informed as to the complexities of her condition and with the help of the right people, ISNA included, we will all begin a process of helping Dana solidify her true sexual nature. The decision to move ahead with further surgery will be completely hers, based on what she decides is right for her.
Do I have any regrets about having gone ahead with feminizing surgery? Not a single one. My daughter has never had to wonder or make excuses as to why her private parts didn’t look like the pictures in books at the doctor’s office. She’s gotten naked around other girls and has been bathed by grandmothers and babysitters alike...none were the wiser. She is rough and tumble by nature and prefers Hot Wheels to Barbies. Do I think that one day my daughter will turn to me and say, “Hey, I’m really a boy and I’m mad at you for what you did to me!”? It’s a possibility. Of course, I hope to say something like, “Hey, I’m your mother and I carried you for nine months and expected you to be either a boy or a girl and you came as you did and I’m mad, too, but not at you! I loved you, and kept you by my side as if you were the most fragile piece of china, and I made certain that your life was filled with the most wonderful experiences and kissed your boo-boos and made the monsters under your bed go away. So yell at me if you like, and when you’re done, let me hold you and we’ll talk and cry and see where we go from here!” God willing.
It’s been said, “Love is patient. Love endures all things.” Once fully informed, I believe you should do what you think is best for your child and don’t look back! Your confidence as a parent and your level of acceptance will determine how well your child adjusts to his or her own unique situation. There will be many days that have absolutely nothing to do with your child’s DSD. Allow yourself to enjoy the mind-numbing normality of your day-to-day existence as no one else has. It is in these moments that you get to leave behind the delivery room and focus on the here and now and the reality of the beautiful child who just made a terrible mess of his lunch and whose nose is running and who is, at that moment, just like every other child that has ever been or will ever be. Normal.
It is my privilege to encourage you in this journey you are traveling with your child. My experience with DSDs was a little different in that, at 72 years of age, I was called to be the legal guardian for a six year old child from another country. I faced many obstacles involving language and cultural barriers, and I gained a new respect for parents and other care givers of children with DSDs. What I learned foremost is the importance of listening to and carefully observing your child.
The details of this case are very complicated. This child for six years had been raised as a girl before being sent to the U.S. for evaluation and surgery. The child’s parents, having four boys, wanted this child to be made to look more like a girl. Laboratory findings of XX chromosomes and a uterus with ovotestes convinced the medical team they should proceed to surgically feminize the child. I was in an emotional turmoil because I knew this was not the appropriate surgery for this child. He seemed to be a boy and to think of himself that way. In preparing the child for surgery I took him to the library and we looked at pictures of unclothed boys and girls. When I showed him what he would look like after surgery he looked very frightened. The next day he asked me to call the doctor and tell them he is a boy. The surgery was cancelled.
It is very important that your child have a psychological evaluation before surgery or treatments where there are any doubts or questions. I was criticized by some people for listening to a small child, but I am so grateful that I did. You are the most careful observer of your child’s behavior. You should make careful notes of how your child interacts within the family, school, etc., to share at medical visits. You know your child better than anyone, except your child himself.
Your child will know in time what gender he/she feels for himself/herself. Although it is rare, you should emotionally prepare yourself that there may be a gender change. In my unique experience with this child, the gender he presented changed back and forth four times in six months. This was most unusual, but be prepared and, if you run into confusion, do seek counseling for yourself. Keep yourself well and healthy so you will be able to keep up with the routines of having a child with a DSD.
Consistently and persistently ask for copies of your child’s medical records. These are the records of your child’s health history, and if something happened to destroy them (like a fire or flood in the office where your records are kept), it would be tragic. With some difficulty I received this child’s medical records. This has been very important, because I have had to share them with another medical team to proceed in caring for him.
Finally, I would like to say: enjoy this special child you have been entrusted to care for. I loved and admired the child sent to me. I can see him, if given the chance, becoming an engineer or working in the trucking business. Focus on the joy of one day seeing your child succeed in accomplishing his or her dream.
With best regards,
As a parent of a child with a DSD, you will go through a range of emotions from blaming yourself, to fear, anxiety, and denial. The time spent awaiting the test results can be especially emotional. It helps for both parents to talk about how they are feeling during this time, as well as being able to talk to other close family members and/or a close friend. Once the results are back, and you’re given the diagnosis, it helps to seek answers to all your questions about your child’s condition. The more you know, the easier it is to cope with.
Getting in touch with a support group right away really helps. There are wonderful support groups available for parents of children with DSDs as well as for adults with these conditions. Do not be afraid to talk about your child’s condition, because the more you talk about it, the easier it becomes.
Be sure to ask your child’s doctor what you should expect in your child’s future as far as medical appointments go, etc. Do not allow yourself to be talked into having cosmetic genital surgery performed on your child. This is something that should be left up to your child when he/she is old enough to make that decision. However do not confuse this with surgery that may be needed to correct repeated urinary infections or other serious medical problems.
As your child becomes old enough to understand, talk to him or her about his or her condition. If your child has fertility problems, you may want to start early talking about how some women are unable to have babies, or how some men are unable to father babies. Then you can tell him/her that there are ways for these men/women to still be a mommy/daddy through adoption. You may start introducing this part of DSDs to your young child, and then you can gradually go from there, as you feel your child is old enough to comprehend more.
As your child gets older, you may want to put him or her in touch with other children with DSDs. Don’t wait until your child is in middle school to start talking to him or her about his or her condition, as this is a tough time in a young person’s life because there is peer pressure, etc., to have to deal with. Being told they have a DSD at this age only adds to the emotions children are going through at this stage of their lives.
Be there for your child! Be honest and open when he or she asks you questions about his or her condition. Most importantly, treat your son/daughter like any “normal” child! And remember, he or she could be worse off, as there are much more serious medical problems he or she could have been born with.