Embracing the Unknowns

December 7, 2016 ambiguous genitalia, Disorder of Sexual Development, Family Stories, hypospadias, November 2016 Feature - Urogenital, Urogenital System 2 Comments

Our son is adventurous, affectionate, good-natured, and strong. He loves playing outside, blowing bubbles, reading books, and playing with anything with wheels. He is absolutely amazing and the perfect addition to our family.

I want the world to know all of this about him.

What I choose to keep private is information about his special need. Only the people closest to us know that when we received his referral, we did not know for certain if he was a boy or a girl.

We started our (second) adoption journey feeling called to adopt a child with a special need from China. We were open to a variety of what we considered “mild” special needs, in either a boy or girl under age three. One of the needs we were open to was hypospadias – a birth defect in which a boy’s urethra forms somewhere other than the tip of the penis. One of our friends had recently given birth to a son with hypospadias, and he had had it corrected by a relatively simple procedure.

I’m going to be honest here – after our dossier was “logged in” in China, we received and declined two referrals before accepting the referral for our son. Saying “no” to children who needed a family was excruciating, and we prayed that both of them would find families who would say “yes” to them.

In both cases, our international adoption doctor found that the children’s special needs were considerably more complex than their files indicated, and we didn’t feel we were the right family for those children.

I share this for two reasons:

1) I think a lot of people feel guilty about saying “no – we are not the right family for this child” even when that is the best decision for their family and the child and allows another family, who is a better fit for that child, to say “yes” to her or him.

2) if we hadn’t said “no” to these two children, we wouldn’t have been able to say “yes” to our son, with his difficult-to-place special need of ambiguous genitalia.

In fact, our two previous referrals had left me feeling deflated about our adoption from China. I wondered if we were wrong – perhaps our child wasn’t in China after all?

Only a few days after our agency told us it could be months before we were matched again, they called and asked if we’d be willing to review a file for a little boy whose diagnosis was “hypospadias”, but who was also described as having “ambiguous gender” and “hermaphrodism” in his file. Since we had not indicated that we were open to ambiguous genitalia – but had said we might be open to needs that were not on our medical checklist – our agency wanted to check with us before sending us the file. My husband and I agreed to take a look.

As soon as I saw our son’s picture, my heart melted.

Here was an adorable toddler boy, sitting on the floor surrounded by toys, looking into the camera with big, sad eyes. He appeared perfectly healthy. His file also contained a photo of his genitals, and yes, they did appear different from what would be considered typical male genitalia. I looked back at his little face and saw a perfectly healthy child who needed a family and who was simply a little different “down there”.

Our International Adoption doctor confirmed this. Everything about this little boy appeared healthy. And, we knew from basic genetic testing in his medical file that he was a 46XY, which is considered a “normal” male. However, our IA doctor let us know that sometimes genetic testing in China is not accurate, and that regardless, our son would need much more sophisticated genetic testing beyond the limited chromosome test from China.

Our IA doctor indicated that yes, this little boy probably had hypospadias, but with the severe degree of hypospadias he likely had – based on the limited information and poor quality picture we had – he almost certainly also had some type of Disorder of Sexual Development (DSD).

She gave us examples of possible DSDs that might lead to our son’s genitals looking the way they did. In addition to more sophisticated genetic testing, he would need hormonal testing and imaging in order to try to determine his likely gender identity. According to our IA doctor, the diagnosis of a specific DSD is “the question” that must be answered for a child with ambiguous genitalia. And, we would ideally take our son to see an experienced Disorder of Sexual Development team, which usually consists of endocrinologists, urologists, gynecologists, geneticists, and psychologists, among others, in order for the diagnosis to be made. For us, that would mean travel out of state.

After that, the treatment for the DSD our son was most likely to have would probably be available locally. Most importantly, our IA doctor told us that children with DSDs thrive in families who are both able to handle their potential medical needs and willing to remain open to potential gender assignment.

Now it was time for us to do a lot of research as well as soul-searching. And actually, we quickly realized we would be a great family for this child. You see, we have always been committed to avoiding gender constraints in the raising of our children. We present our children with lots of options and let them decide where their interests lie (so, for example, our daughter loves learning about space and how engines work and equally loves arts and crafts, and so far our son loves trains and cars and also loves cuddling and caring for his baby doll).

Being people of faith, we believe that all people are created in the image of God and are equally valued by God, whether they fit a societal “norm” or not. While we knew all of this intellectually and spiritually, the idea of adopting a child for whom we didn’t know the sex and didn’t know a future gender did seem daunting. We needed to make sure we were ready to be open to the unknown with regards to this child’s sex and gender identity.

We are blessed to have a friend who is both an endocrinologist and adoptive mom, and at this point we were ready to involve her in our decision-making. She discussed with us some of the possibilities for our son – that he could be a boy genetically, hormonally, and both internally and externally, with a severe hypospadias that needed to be repaired. (A pediatric urologist friend of hers reviewed our son’s file, too, and felt that this would be the case for him, but our IA doctor was much less certain).

On the other hand, this child could have a more complex DSD that might be difficult to diagnosis and/or that might require ongoing treatment. And, with some or even many DSDs, only the child should be able to decide whether or not to have surgery, meaning that treatments would need to hold off until the child was old enough to make such a decision for him or herself.

Both our endocrinologist friend and our IA doctor told us that once a diagnosis is made (i.e. a specific DSD is identified), there is nearly always an indication of whether the child would likely identify as male/female, so that helps parents decide how to raise the child in the interim (while staying open and flexible to all possibilities). We learned that with the help of an experienced DSD team, we could determine the best course of action for our child.

As my husband and I discussed the possibilities together, it became clear that there was no “worst case scenario” to be prepared for – that all possibilities would be okay with our family. We continued to view this child as a perfectly healthy child who would need unconditional love and support, and these were things we knew we could give.

This was our child, and we eagerly claimed him as our own.

That being said, while we waited to travel to China to bring our son home, we were anxious with not knowing all that we didn’t know!

How would we share our news with family and friends?
What clothes would we bring?

We decided a few things during this time of preparation and waiting, based on the idea that we would not and could not know our child’s sex and gender identity for some time.

First, we decided to let people know we were adopting a son. We told only a few people who were closest to us that his sex and gender identity were unknown, both to prepare those closest to us and to seek their support. We figured that we could explain otherwise publicly later, only if we needed to; in the meantime, we wanted to maintain our son’s privacy.

During this time, we also chose a name for our child that was gender neutral to allow flexibility for our child in terms of his/her identity. And, we purchased only a few items of clothes, trying to remain as gender-neutral as possible in our selections.

After thinking so much about our son’s special need… when we finally met him in China, it was actually far from our mind. As soon as we met him, it was clear that he was feeling traumatized. He could best be described as catatonic at our first meeting, and all our energy was invested in helping him feel safe with us. During his first day or two with us, it became obvious that he had been quite neglected. However, over the course of the next few days, he slowly began to trust us and to accept our attention and affection, and his cheerful and adventurous personality began to emerge.

As we got to know him better, we found that – at least from our perspective – his “ambiguous genitalia” was not nearly as ambiguous as it appeared in his medical file. He genitalia appeared male to us. In addition, he exhibited many stereotypically “male” behaviors (he seemed to be very physical and active and was immediately drawn to any toys with wheels).

At least for now, we remained comfortable with the idea that we was our son. We felt he was perfect just as he was, though we did find that he was rather unnecessarily and invasively (in our opinion) poked and prodded by the curious doctor at his visa medical appointment in China. We began to feel some of the societal stigma that was directed at people with genital differences and remained committed to protecting our son’s privacy the best we could.

We wanted to visit our son’s orphanage so that he could know more about the place where he’d lived since he was only three days old. However, it was clear that if we brought him back there, that would traumatize him further, so my husband travelled there alone.

It’s a good thing we didn’t bring him.

While it was clear that the orphanage workers cared for our son the best they could despite being woefully under-staffed, they asked my husband (through our guide/interpreter), why would we want to adopt a child with this type of “disfigurement”? One orphanage worker motioned to a sweet little boy in a crib with a different special need and asked (roughly translated): “Why not adopt him – at least he is intact?”

Hearing this negativity from the people who had cared for our son was heartbreaking.

I share this to give readers a glimpse (perhaps) into why so many children with “ambiguous genitalia” are waiting to be adopted. Our guide explained to us that most Chinese people do not believe anyone like our son could lead a full, “normal” life.

Fast-forward almost a year…

Our son absolutely leads a full and “normal” life and is thriving. Our main focus for the first several months at home was attachment and helping him heal from his traumatizing early life. Thankfully, he quickly attached to me, and although it took many more months and a lot of work before he was securely attached to my husband, we now feel our attachment to our son, and his to us, is strong.

We travelled to visit our IA doctor after being home only a couple of weeks, and our son was indeed found to be healthy. Due to his time in the orphanage and the neglect he had experienced there, he was delayed in all areas of his development, but the IA doctor and her team expected he would catch up quickly in our family. In fact, when we had his development reassessed six months later, he was on target in all areas! What a miracle!

During our first weeks at home, we also travelled to visit a Disorder of Sexual Development Clinic, as our state does not have one. While we could have seen several different specialists at our local Children’s Hospital, we wanted the team approach and expertise that only a DSD clinic could provide. And, with a DSD Clinic, we only needed to make one appointment to be seen by a team of experts who would evaluate our son for a potential DSD.

At our first visit, the lead endocrinologist told us she did not view our son’s genitalia as “ambiguous” at all, confirming our first instincts in China. Then, over the course of months and through various tests, we found that our son was indeed genetically male, had a “male brain” (due to male hormones he was exposed to in the womb), and showed normal hormone levels for a male his age. Further testing has not revealed any abnormalities, so we still aren’t sure why our son developed the way he did. The team confirmed that our son is unambiguously a boy, and they recommended we surgically repair his hypospadias.

Honestly, we were very surprised by this news. We had prepared all along to hear that any surgical treatments should wait until he was older. However, the testing, and the advice of the DSD team at the U of M, gave us confidence that we would have our son’s hypospadias repaired in a two-part surgery.

So far, he has undergone the first stage of the repair. The surgery went well, without any complications. We worried before the surgery that our son would feel frightened and that surgery would further traumatize him. But at no point did our son seem frightened prior to surgery, and he did not know he was separated from us thanks to the good work of the surgery team at the Children’s Hospital associated with our DSD team.

When he woke up, he saw me and reached for me, ready to cuddle. He had no pain until several hours later, at which point things got harder for a while. The first few days were difficult, mainly because our son had a catheter and frequent bladder spasms. After having it removed a week later, he immediately felt better, and his healing has been smooth.

In a few more months, he will undergo stage two of his repair. We are hoping for an equally uneventful surgery, and we are praying for no complications, although the complication rate (the likelihood of fistulas, or small leaks in his new urethra) is higher for this second surgery. If that were to occur, he would need another, smaller surgery to repair the fistula.

Our son’s genitals may never be completely “normal,” but what does that really mean? It’s also possible that our son’s body might react differently from what’s considered “normal” at puberty. The DSD team will monitor him – we will likely visit them once a year – to make sure he grows appropriately and to see if he needs help in the way of hormone treatments to help him fully mature during puberty.

We don’t know what the future holds for our son or his body, just as no one knows what the future holds for their children. What we know for sure is that we love our son for who he is, and nothing in the world will ever change that.

There are so many children waiting to be adopted with a diagnosis of “ambiguous genitalia.” This seems to be a blanket diagnosis for any type of genital difference. I know that children with this blanket diagnosis can be “difficult to place” in adoptive families, probably due to a lack of information and perhaps due to fear of the unknown.

I want families to know that these are healthy children whose bodies are just a little different, who are waiting for a family to love and accept them for who they are, and to provide them for the care they need.

These children, like all children, are created in the image of God, and will lead full and wonderful lives in the care of families willing to give them the unconditional love all children deserve.

We took a leap of faith, embraced the unknowns, and we are blessed every day because we did.

Some resources that really helped us as we considered our son’s referral include:

Special Needs Resource group (closed Facebook group)
Families of Children with Urogenital Differences (A Secret Facebook group – ask at the Special Needs Resource group who to contact to join)
The Handbook for Parents by the Consortium on the Management of Disorders of Sex Development

Family story:

Five Facts about Ambiguous Genitalia

Sample list of DSD clinics:

Duke Child and Adolescent Gender Care
University of Minnesota’s Leo Fung Center for Congenital Adrenal Hyperplasia and Disorders of Sexual Development

– guest post by an anonymous mama

2 responses to “Embracing the Unknowns”

  1. Bree says:

    Thank you so much for sharing your story. We have a son that was also born with ambiguous genitalia and is XY intersex. He is incredibly smart and perfect! We are considering adopting a child with hypospadias as we have been down that medical road already. I wish the adoption process wasn’t so complicated.

  2. Holly says:

    You guys are great. Your clear love and acceptance of all people as they are, made in God’s image, is what faith and life is all about.

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