I hesitate to write about my daughter’s adoption story for fear I might scare others away. However, her story is one of sorrow that has turned into joy. I want to share her joy.
My daughter has a brain injury and microcephaly. She also loves to eat jelly beans, tease her siblings, and prefers to wear green socks.
When we reviewed her adoption file, I was warned that her file had been pulled by several agencies over many months to review, being turned down each time. I understand why. Her file was scary…
as a young infant, brain injury, seizures, stroke, bleeding in her brain, months in the hospital.
at age 2, delayed milestones and microcephaly.
A really scary file to review. Others said no, but we said yes.
My daughter’s file definitely pushed us to our limits, and to be honest had I know the full extent of her medical needs, I question if I would have said yes. Like most people, we were hesitant to check the boxes on the medical checklist for the more complex and severe needs. What could we really handle? We had to have courage that she was much more than her file, and that we could handle more than we knew.
I did my research, so I could make an educated decision.
I learned about microcephaly. Microcephaly means a small head. It is defined by measuring around the head and comparing to the head sizes of other children, which falls on a standardized bell curve (most kids are near the middle). Children with microcephaly fall extremely far to the small end of scale compared to other children of the same age. A child’s head grows as the brain tissue inside grows. A lack of head growth may mean a lack of brain development and growth, but not always.
I learned that the head circumference needs to be viewed with some caution.
1. I learned that microcephaly became a key measurement to Western professionals after research in extremely deprived orphanages (such as in Eastern Europe) found that it was correlated with life-long outcomes for children (smaller head size related to worse outcomes). However, there has not been similar research done in China, or in orphanages that have improved conditions (at least not that I could find).
2. I also learned that there are limitations on normative data (the bell curve) because the norms for head size do not compare to a child’s general size and that the norms are not specific to children from China. I have been told physicians in China do not regularly measure head size (or really care about it for that matter).
3. I also know that correlation doesn’t equal causation. Microcephaly and poor outcomes are only correlated. Microcephaly does not cause decreased IQ or increase behavioral issues; other factors likely cause both (such as severe neglect and malnutrition, fetal injury for alcohol or drugs, or brain injuries).
4. Some professional are proposing that head growth over time may be more important than the measurement alone. Steady growth is an important and positive sign, while stalled growth can be concerning.
5. So what? Microcephaly is part of a larger picture about a child’s health and well-being, so I needed to put it in a larger context for my daughter. I learned about her orphanage and could determine that her microcephaly was not likely caused by issues with malnutrition or severe neglect. I was left with several options.
6. Some people just have smaller heads (genetics, especially if their entire body is measuring small for age).
7. Some medical conditions might lead to microcephaly (such as genetic disorders, disorder with developmental delay, or prenatal injury from substances abuse, illness, or environmental toxins).
8. Lastly, brain injury can lead to decreased brain volume and growth, leading to microcephaly.
I researched brain injuries in infants.
1. I learned about bleeding disorders that might cause bleeding and strokes in the brain. In countries without proper nutrition for nursing mothers and infants, vitamin K deficiency can occur leading to decreased blood clotting, thus increasing bleeding in the brain from small injuries.
2. I learned about how viral and bacterial illness can cause bleeding or strokes, such as meningitis.
3. I learned how trauma from an injury or being shaken is also a common cause of bleeding and strokes.
4. I learned that the imaging (such as a CT scan or MRI) may be helpful to understand what has happened to a brain, but it cannot tell how well a child recovered or what long-term outcomes will be for a child.
5. Encouragingly, I learned young brains are extremely adaptable and can heal well from most neurologic (brain) injuries given an enriched environment and additional therapies as needed.
6. A skilled doctor can give you an interpretation of the general risks, but the variability for children is huge. There is a high risk of long-term deficits that are mild, such as learning disabilities, behavior or sensory problems, and decreased cognition. Most major injuries that will have long term impact will show “red flags,” such as increased tone (cerebral palsy), vision deficits (misaligned eyes or severe vision deficits), seizure disorders, or significant sensory seeking behaviors (self-stimulatory behaviors). Yet none of these signs alone can determine outcomes for a child.
Our decision to adopt my daughter was made on careful consideration of all the factors, not just her head circumference. My daughter’s records told us that she had bleeding in her brain treated at the hospital, then she was sent to the social welfare institute (SWI).
The SWI diligently recorded her head size, which was remarkably small (very far to the small end of a normal bell curve). A positive note was that her head, while very small, was consistently growing over time. The SWI reported no major concerns, and my research confirmed they took above average care of children. We knew there was a high risk of mild issues, but risk seemed identical to the general risks of adoption in general. We looked for “red flags” of more severe brain injury, but were reassured that she looked like she was developing well.
Truthfully, there is no way to know for certain for most children. We had to accept that if there were answers, it would have to wait until my daughter was home in the US. We prepared as best we could. We knew that we needed a medical team that would include a neurologist when my daughter arrived home and that we would likely do neuroimaging and other testing to further determine her medical needs. We knew there would likely be a need to have rehabilitation team of physical, occupational, and speech therapist, as well as a visit with audiology and ophthalmology to check out her developmental needs.
As with most adoptions, there are a lot of unknowns. We didn’t know how sweet, stubborn, and cunning she would be. We didn’t know how much a child could love jelly beans. We didn’t have a clue about the extent of her medical needs. A few months home and we thought it was all under control. Internal adoption clinic – check. Ophthalmologist – check. Audiologist – check. Neurology – check.
Everyone thought she looked great. Everyone, except me. I knew something still wasn’t right. I just knew. I pushed the neurologist to get a neuroimaging (a picture of her brain). We needed more answers about what had happened in her brain.
Fast forward a few days, and we were sitting in a neurosurgeon’s office staring at images of our daughter’s brain. The doctor looked at my beautiful daughter and told me that she shouldn’t have made it alive through her injury, much less the following years at an orphanage.
And then I cried. I cried for the time she was alone in the hospital as an infant. I cried for the neglectful care she received. I cried in thankfulness of the care she did receive, as it saved her life. I cried for the lost years – for all her pain and lost chances. We were not prepared for this, but it didn’t matter. I knew that it was my turn to fight for her, so she could stop fighting and learn to be a little girl again.
We got answers. Her brain was a mess. Her early injury was likely from trauma, whether a car accident, fall, or being shaken. Someone saved her life by bringing her to the hospital, and then the hospital saved her life for months.
However, her early life injury was never properly treated. She was discharged without any follow-up care (I later learned the social welfare institute was never given her records from the hospital). Over the years, her brain continued to bleed, slowly. The blood hardened and took up large spaces in her brain. As a result, her brain couldn’t grow, which caused her microcephaly.
The treatment was neuro-surgery. The surgeon removed parts of her skull, removed all the hardened material from the chronic bleed, and then reassembled the skull. We spent time recovering in intensive care, but remarkably she bounced right back (children are remarkably resilient). A week later we were home desperately trying to keep an active child safe as her skull healed. After surgery, the biggest gift was that she was happy. She began to radiate joy for the first time.
Her recovery was amazing. Given a chance, children will thrive. My daughter just hadn’t had her chance yet. She is now thriving. Her development continues to make leaps and bound every day. She is quickly catching up to peers in most areas, with a handful of development issues that we are working through. We will have life-long challenges related to her brain injury and microcephaly, but they are a minor part of our lives.
My daughter’s outcomes could have never been predicted by her medical file, head size, or her MRI images.
We are now able to look back at our daughter’s journey and reflect…
she is stubborn and resilient, and she survived more in her first few years of life than anyone should ever have to endure.
she brings joy and completes our family.
I am relieved I didn’t know what I was getting into, as I am not sure I would have known that I could be brave and strong enough to carry her through it. Being a parent gives you remarkable strength.
I fight to protect my daughter and carry her through her challenges, and to give her back her childhood that she lost. She is my daughter, and now I am here to fight this battle for her, so she can enjoy just being a child.
All children deserve parents.
I want other parents to please know that if a child’s needs seem overwhelming or scary, they simply need a parent even more. I was braver and stronger than I knew I could be, and I hope others believe they can be too.
– guest post by an anonymous mama