If a friend told me that she had to have five pelvic ultrasounds and three gynecologist visits in the past thirteen months, I would worry. I can see myself, sitting with said friend in a coffee shop, my expression dropped, my throat sticky, my chest tight with the realization of what that all might mean.
I just took my daughter to her fourth pelvic ultrasound. She is nearly eight months old.
I sat on the edge of the bed, hunched over, holding her head to my body, the lower part of her laid out on the hospital bed for the ultrasound, and nursed her through it.
She watched my eyes the entire time. She played with my shirt sleeve. She listened to Somewhere Over the Rainbow by Israel Kamakawiwo’ole on my phone. She smiled and cooed and looked lovely in the low light of a room where an ultra sound is being preformed.
“This is our last ultrasound,” I told the tech. “I finally figured out how to keep her still during the last one.”
“Is it?” she says.
“Yes. This is just to make sure they are gone,” I pick my daughter up. She is playing with my phone. “Are they gone?”
“They look the same as last time,” she says. She does not sound positive. She does not sound reassuring. She also does not sound scared to tell me. She does not leave the room to get the doctor.
My daughter was born with ovarian cysts.
I’m told this happens. I’m told people find them during third trimester ultrasounds, just like we found them, with my son sitting on a couch, looking through the prizes in a big brother gift bag, my husband sitting next to my son, trying to keep him in place, but also trying to pay attention.
I’m told they go away after birth, after a few months, after six months, it could take a year. I’m told this is why no one I know has ever heard of babies born with ovarian cysts—they are gone before many people even think to look for them.
The cysts are small. They are the same size as they were at the time of the last ultrasound, only a fraction of what they were when we first found them, but there they are, not gone.
Today, my husband and I will drive my thirteen month old daughter to Texas Children’s Hospital in Houston, Texas.
This will be her third visit to see a pediatric gynecologist specialist.
Last month, the doctor told us the cysts were gone. She said, specifically, that there were no cysts, only folicules. I thought that meant they were just so tiny now, they were classified differently. I didn’t realize until two days ago that folicules are normal. She is supposed to have them. The cysts are really gone.
But still, this will not be our last appointment. There is always something, some new thing, that brings us back for another. Now, her endometrial lining is thickened, like before a period.
My baby’s body wants to have a period.
Today, we will talk about test results from labs done at the previous appointment, to see if her body is producing estrogen. We will start a bone age test, to see if estrogen is affecting her bone growth. This will add regular X-Rays to her list, at least two this year.
There is also a chance that, today, she will be totally fine. Her body will have resolved the issue itself. That is what I have expected to hear at every appointment, but again, there is always something.
Today, I am nervous. It comes out in strange ways: trouble choosing an outfit, a fight with my husband, cookies for breakfast, writing in the car.
As we near the parking garage, I can tell that what I’m feeling is different than the other appointments. Before, I felt confident that my daughter would be fine; that we wouldn’t be back.
Today, I feel hope. I have hope for this to be the last appointment where everything is fine. I am not confident. But I am hopeful.
My daughter sits in a red wagon at the end of a short hall; my husband pulls the wagon to the end of the hall and back, over and over. She is holding a pink, fuzzy stuffed cat with her right arm. Her left arm has an IV in it, covered in netting and supported by a board. It looks like a tiny cast.
My daughter will have a brain MRI today.
Things are happening fast. Just yesterday was our third visit with her gynecologist. Her blood test showed an elevated FSH level. Her bone age test showed effects of estrogen on her bones. This means that her tiny body makes estrogen. There is a thirty percent chance that the cause is a growth on the pituitary gland; she needs a brain MRI to rule out that possibility. Because you have to be still for an MRI, she will be put to sleep, under anesthesia.
There is no growth; I’ll tell you that now. It was the most anticipated phone call for which I have ever waited. I missed it, the first time. My family was inside Chic-Fil-A, my phone in the car. I missed it by only minutes, franticly called every number given on the answering machine in the department and waited another day before the doctor could call me back.
This means, first, that my daughter will not need brain surgery. I think, once you are up against possible brain surgery, things that happen afterward don’t seem as scary as they might have seemed beforehand. Second, this means that her body just makes estrogen. She will need to take medicine to prevent her body from starting puberty until an appropriate age.
My one year old daughter has precocious puberty.
My daughter’s doctor said if we had not found this now, and she did not receive medicine now, my daughter would have started her period at age three or four.
If she wasn’t born with ovarian cysts, we wouldn’t know. If I didn’t get an ultrasound in my third trimester, just to show my son his baby sister, we wouldn’t know there were cysts. If I didn’t change doctors when I was twenty weeks pregnant, because one of the office staff members was mean to me at the previous doctor, we wouldn’t have known that 3D ultrasounds were available locally and wouldn’t have scheduled one. There were so many ‘what ifs’ to find this one thing.
If you google precocious puberty, you will not find much relating to precocious puberty in babies; I didn’t find anything. Most of the information online references six or seven year old children.
I feel that my family’s medical information should remain private, hence the anonymous post, however; it was awfully daunting to be alone with this story unfolding, to find nothing similar online.
If you are looking, this is part of our story and you are not alone.