She Is Mine

Ayla Enhle Chimwaza’s Story, told by her mother

When I was pregnant with Ayla, I went for my scans and everything seemed fine.

I expected a normal baby.

I had already had a C-section with my first daughter, so Ayla was also delivered by C-section. When the doctors first showed her to me, I was not prepared for what I saw.

I want to be honest about that.
She did not look the way I expected my baby to look. I was shocked. I became depressed almost immediately. I called my mother, and I said something that I regret now. I told her that I had given birth to an alien.

Today, when I look at Ayla, I cannot believe those words came from me. Because that is not what she is at all. She is beautiful. She is resilient. She is my blessing. And she is mine.

At first, though, I did not understand what was happening. When Ayla was only days old, she developed pneumonia. We saw doctors, and at one point we were told she might have a severe chromosomal condition. I went home and searched for information, and what I found frightened me terribly. Later, we were able to go to another hospital, where doctors told us that Ayla had Goldenhar syndrome and hemifacial microsomia.

Strangely, getting that diagnosis gave me some hope back. At least now there was a name. At least now I could begin trying to understand my daughter.

Ayla has differences involving her jaw, palate, ears, hearing, muscle tone, growth, feeding, and breathing. She is very small for her age. Feeding has never been simple. When she was younger, sometimes milk or food would come back through her nose. She had difficulty opening her mouth. Even when she could drink, I could see how much work it took from her. She would sweat because she was using so much energy just to feed.

At night, breathing can still frighten me. Her tongue can fall backward and affect her airway when she sleeps. So we wake throughout the night. We change her position. We listen to her breathing. We watch. And when something does not sound right, we go to the hospital.

If we have money, we use it. If we do not have money, we borrow.

You do what you have to do. There was one moment that changed me completely.

When Ayla was still very young, I found her unresponsive. I had to resuscitate my own child at home. I gave her mouth-to-mouth and then rushed her to the hospital. After that, I became paranoid.

I could not simply put her down to sleep and walk away. My mind would immediately ask: What if I come back and she is gone? I already had insomnia before Ayla was born. After that experience, sleeping became even harder.

You can imagine what it is like to be exhausted but still afraid to close your eyes. For a long time, caring for Ayla felt like managing one problem after another.

Breathing. Feeding. Weight. Hospital visits.
Hearing.
Appointments.
Money.
Work.
Then you wake up the next morning and start managing again.

But somewhere along the way, I stopped seeing only the things Ayla could not do. I started noticing everything she was learning to do. Those moments have become some of the happiest moments of my life.

When she was born with differences in her ears, I thought, Maybe my child cannot hear. Then one day, I called her name. And she turned.

I do not know how to explain the joy of discovering something like that. Someone else might see a baby turning toward a sound and think nothing of it. For me, it was everything.

Now she has hearing aids. There was a time when Ayla could barely open her mouth. I was terrified to introduce solid food because I thought she might choke or be unable to swallow it. Someone encouraged me: Just try. Let her brain learn that this is something new.

So we tried.

At first, the spoon itself was difficult. Then she began opening her mouth. Then swallowing. Now she can eat. She can sit. She can play by herself. She is trying to crawl.

Every one of those things feels like Ayla saying to us: I am still here. I am still trying.

And when she tries, I have to try too.

My mother has been one of the biggest reasons I have survived this experience. I do not know what I would have done if that woman were not in this world. She lives nearby, and it does not matter what time I call her. She comes.

Sometimes she can see when I am entering that dark space again—when Ayla is sick, when I am exhausted, when the questions start coming back. Then my mother will say, essentially, Go. Get some air. I will stay with the baby.

She knows how to care for Ayla. She stays with her when I have to work. She gives me somewhere to put the fear for a little while.

Our family helps however they can. When feeding became difficult early on, my aunt helped us get specialized bottles. Later, when those became worn out, we received new ones through an organization that supported us.

People hear “support” and sometimes imagine enormous things. But when you are caring for a child like Ayla, a bottle can change your day. A hospital trip can change your week. Someone watching your baby for an hour can change your ability to keep going.

Finances remain one of our greatest challenges. I work as an accounting assistant, and I do not earn enough to comfortably provide everything Ayla needs.

I go to work because I need the money to take care of my children. That is the truth.

There are days I do not want to go. There are days I cry in the office.

One of the hardest things has been working in an environment where people do not always understand that I cannot schedule Ayla's illness. I cannot tell her: Please do not struggle to breathe today because I need to report to work tomorrow.

Sometimes I take her to the hospital and then I am expected to wake up the next morning and go to work because technically I am not the person who is sick. But when your child has a condition like Ayla's, you are living the illness with them in another way.

You are watching. Managing. Planning. Worrying. Borrowing money. Getting to appointments. Learning terminology you never expected to know. Trying to decide when something is serious enough to go to the hospital and when you simply cannot afford another trip.

That is part of the story people do not always see. Another part is the ignorance surrounding rare conditions. Sometimes even healthcare workers do not know what Goldenhar syndrome is, and I find myself explaining my daughter's condition.

In the wider community, there is even less awareness. In African communities, when a child is born looking different, there can still be beliefs that something supernatural has happened—that the child is cursed or that someone has done something wrong.

I understand where some of those beliefs came from. Generations before us did not have the medical explanations we have today. But we know more now. A child being born with a rare condition does not mean that child is cursed.

A different face does not make a child less human. Different ears do not make a child less deserving. And a diagnosis does not decide whether a life has value.

I am grateful that the traditional people around me have never treated Ayla that way. They have accepted her. They encourage me to take her to doctors. They help when they can.

That matters. Because the hardest part at the beginning was not only caring for Ayla. It was accepting what had happened. I asked myself what I had done wrong. Why had God given me this? But as the journey continued, my understanding changed.

Sometimes, I think God gives you a blessing in a form you did not recognize at first. Ayla has brought people into my life who have shown us extraordinary kindness. Doctors have tried to help her. Organizations have helped us. Family members have stepped in. People who have never even met her have cared about what happens to her. And Ayla herself keeps teaching me. She keeps fighting.

That is why when someone asks me what I want people to remember about my daughter, my answer is simple: Ayla is a strong baby. She is beautiful. She is resilient. She is a blessing in my life. And she will fight.

I hope one day she receives all the surgeries and care she needs. I hope she grows. I hope she walks. I hope she goes to school. I know there may be bullying. I cannot pretend the world will always be gentle with her.

So I hope I can teach her something stronger than that. I hope she learns to know her worth. I hope she understands that her physical appearance does not determine the outcome of her life. I hope she becomes compassionate because she knows what it feels like to be different. I hope she achieves her goals. I hope she grows into a woman. I hope she becomes a mother if that is what she wants. I hope one day she becomes a grandmother.

Maybe even a great-grandmother. I want the whole life for her. Not simply survival. A life.

And I want to be there. I want to help her for as long as she needs me. But I also know I cannot treat her like an egg forever. There will be times when I have to protect her. And there will be times when I have to let her fall. If she trips, I may be there to catch her. But she has to do the walking herself.

That is what I want for both of my daughters: not a life without difficulty, but a life in which they know they are capable. If I could speak to another mother who has just given birth to a child with a rare condition, I would not tell her that it is easy. It is not. And I would never expect someone who is standing where I once stood to immediately understand everything I understand now.

But I would tell her this: Your child is a blessing. Keep going for your child, because your child will keep going too. Take them for their vaccinations. Take them to the doctor. Ask for help.

If you cannot afford the food, ask. If you cannot afford the milk, ask. If you do not understand the diagnosis, ask. Do not let shame keep you inside.

And do not let anyone tell you that your child is cursed. Your child deserves the best you can give them, just like any other child. When Ayla was born, I wanted to hide.

Now? I will carry my baby with pride in the street. People can look at her ears. They can look at her face. They can wonder.

I do not care anymore. I know who she is. She is beautiful. She is strong. She is a blessing.

She is mine.

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