“When my husband handed me my newborn daughter he told me her arm looked completely different from any other baby. It was much shorter and she seemed to be missing fingers. I was shocked and in complete disarray. My husband and I felt totally lost as the hospital where I had her didn’t have any answers for me regarding my daughter’s condition. They asked ‘What drugs did you take while pregnant?’ Now, I never missed any of my prenatal appointments with that practice so it was depressing to hear they even THOUGHT I would do something to jeopardize this pregnancy. It didn’t really get to me until about 24 hours later when families came visiting and they all had a solemn look. That’s when I really started crying.
The doctor who came to see me 48 hours later looked at my daughter and said, ‘I think she has spina bifida, most likely a heart defect and probably some other conditions. These kids like this usually come with a lot of baggage.’ I was heartbroken. He offered no hope for us.
After we were discharged, we took her to different hospitals, most of which were orthopedic, but they didn’t have any possible solutions for us. No one even knew the name of her condition, all they said was it’s a congenital deformity. They didn’t seem to work that hard to find out. We felt lost.
I was angry at God and the world, I shut myself out from the world and went into a deep depression. Thank God for my number one support system, my husband. He stood by me in those dark moments, as did my family, my mother-in-law and a few family friends. They showed me love even when I was down and just kept saying, ‘She’s beautiful. Look at her. You have a beautiful daughter.’
It was during those dark moments I used trusty Google and discovered what my daughter has is called Ulnar Deficiency. Basically, she had significant problems in the function of her hand, fingers and elbow. Her arm is shorter, with a curved forearm and stiffness in her elbow and fingers. She has a missing thumb that won’t ever grow. The diagnosis crushed me. I remember thinking, ‘What kind of life will she have?’
For a whole year I locked myself and my baby indoors and cried myself to sleep every night, I even refused to bring her outside and in front of people. I was scared for my daughter and what the future held for her because I know our environment and society can be mean. I knew I had to protect her by any means possible and her smile was what also kept me going those difficult days. But I didn’t want to show her off, or let anyone see her. At all.
Since then we have had our share of mean comments and some people have been downright disrespectful. Saying things like, ‘What a freak,’ and ‘Stay away from that little weird girl.’ The head of the school told me that I should be prepared as kids all over the world are mean and she would be bullied, laughed at and people probably would not want to be her friend.
Through it all I have learned that it is my responsibility as a mother to show others how to treat me and in turn, my daughter will learn the same. I have learned to encourage her through her trying times, like when she’s having difficulty doing some tasks, and I make sure I let her know she can do anything she puts her mind to. She’s not limited by her limb difference and she is just different, not less. I also make sure I celebrate her when she overcomes difficult tasks, like when she was learning how to ride a bicycle I was always cheering her on saying, ‘You can do it, baby!’ The day she finally rode the bicycle unassisted we celebrated like crazy! My advice to other parents is to treat your child like any other. They can conquer things you’d never dream they would!
She doesn’t even let anyone treat her special, she’s strong willed, resilient and a go-getter. She believes she can get anything done no matter how difficult the task and she always tries her best to prove that she’s not limited by her limb difference. She gives her siblings a run for their money!
Through it all I am always there for my kids and nurture them. I put my trust in God that this was His plan and it’s been a great lesson. She’s one of my biggest joys. They were right, my daughter is beautiful!”
This story was submitted to Love What Matters by Adetola Kayode Ogunleye of Nigeria. You can follow her journey on Instagram here and her daughter’s here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Check out and subscribe to our YouTube channel for inspiring videos.
Read more amazing stories of children with physical deformities here:
‘Why isn’t she letting me see my baby? I want my baby!’ Our nurse was stalling, looking for something. But what? I felt sick.’: Mom’s newborn diagnosed with Pfeiffer Syndrome, wouldn’t ‘change her uniqueness for the world’
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