Medical personnel are trained to care for the sick and nurture them back to life. As a matter of fact, doctors heal but they prefer to attribute this feat to God, hence their popular saying: “We care, but God heals.”
One can only imagine what is going on in the mind of a medical personnel of over 15 years experience who continues to heal or care for patients with different ailments while her own child is down with a medical condition that defies medical intervention. It looks more like a case of a butcher whose children eat only bones, instead of meat or the clothes merchant whose children wear rags!
This is, in a way, the story of Maria Odusanwo, a physician and a mother of two, resident in Houston Texas. Her life changed six years ago when she had Inioluwa, her beautiful daughter with phocomelia syndrome.
Though she informed everyone that she had given birth to a beautiful daughter, she was not ready for the world to see that she gave birth to a child with the rarest form of deformity called phocomelia syndrome, an extreme rare birth defect, shortage of upper extremities and absence of some digits on both hands.
What the ailment is all about
Maria, who is celebrating Ini’s sixth birthday by showing her to the world as well as launching an NGO, in which she hopes to educate and inform people about the disease and steps to take to help the child live a normal life, said though her heart skipped a bit at her birth, she wouldn’t trade her experience for anything in the world. For her, she believes Ini coming into her life was for a purpose and the purpose has just been revealed.
In people with this condition, the bones of the affected limb are either missing or underdeveloped. Phocomelia can be inherited as part of a genetic syndrome or maternal exposure to a certain drug (like Thalidomide) during pregnancy. Unfortunately, as at now, there is no specific treatment for ailment other than managing all the complications that may arise.
But for Ini, as she is fondly called, the mum cannot recall being exposed to the said drug, Thalidomide, during pregnancy. But she may have inherited the genetic syndrome from the “parent.” After she was born at Ben Taub Hospital, Houston Texas, she was then transferred to Texas Children’s Hospital where she has been under close observation and treatment till date.
Ini remains a medically complex and needs close monitoring. Due to the malformed heart, she has had series of medical procedures from pulmonary arterial band to restrict extra blood from going to her lungs, to cardiac catheterization to series of open-heart surgeries, hand pollicization and dental procedures amongst others. She is currently on betablocker, antihistamine, blood thinners etc. to further manage and prevent complication of her medical conditions.
Challenges of raising the baby
One constant figure in Ini’s life is her mum (Maria) who has been her rock. She has has braced herself to cope with the challenges in raising a child with special features and a blessing to nurture her daughter who has refused to give up on life, nor allow her physical condition limit her cognitively and physically.
The early days were difficult. Raising her from cradle, Ini did not sit up nor crawl like every other child. After much therapy interventions (thanks to the Early Child Intervention team), she scooted on her bottom due to lack of support of her both hands. In spite of all these challenges, she was resilient and fought through. She sat and also scooted on her bottom all thanks to the several therapists that have been in her life up until now. She has had previous and present occupational, physical, special skills and speech therapies.
As she grows older and becoming more aware of herself, her mum has taken it upon herself to make her see how special she is and never feel less of herself regardless of how she looks physically. She constantly wonders and asks her mum why she is different from other kids. And, her answer has always been that it is because she is very special and unique.
Ini has some special abilities like using her feet to navigate the tablet or computer and to do other stuffs like dressing and picking up things like her books etc. Today, she attends a regular charter school (KIPP Unity, Houston Texas) where she is regarded as an A student; she has received a couple of awards even though she is still in kindergarten.
According to her mum, Ini is an embodiment of joy, very talented, smart, brave and courageous young lady. Her mother will be launching, in the nearest future, Hephzibah’s Foundation for Phocomelia’s kids and kids with any kind of congenital malfunctioned hearts to support and encourage them to be who they are destined to be.
Motherly instincts as sure source of protection
Speaking on the journey with her beautiful daughter, Maria said: “From the moment I gave birth to her, right from inside the operating room my life took a dramatic turnaround. While I was still recovering from the caesarean section (CS), she was taken to intensive care unit (ICU) because she couldn’t breathe properly and her heart rhythm was unstable due to her congenital heart defects. She was immediately flown to Texas Children’s Hospital (TCH) for immediate medical attention. I didn’t have the privilege to hold her for the first 24 hours of her existence neither did I have skin-to-skin bonding with my little bundle of Joy.
“I have never hidden my child from day one. Although my heart skipped for a second when I saw her, I also could not explain the deep rush of love I felt for Ini. Even though I was in tears and in a state of confusion, from the moment I set my eyes on her, my motherly instincts set in and all I could think of was to protect and be there for my daughter which I will do for her as long as I breathe.
“From the moment she was flown to Texas Children’s Hospital, she and I have been in and out of the hospital. She has had over five major surgeries-from pulmonary arterial band to restrict extra blood from going to her lungs, to cardiac catheterization to series of open-heart surgeries, hand pollicization, plastic surgery for facial laceration and dental procedures amongst others, and still has over several future scheduled surgeries (arms lengthening, pollicization, open heart surgery etc.). I have faced lots of emotional, psychological, physical and financial challenges with her but we have been able to pull through it.
“Unfortunately, I will not categorize any look or rejection or lack of acceptance as funny gestures…I will not categorize those as “funny” gestures at all! I will say those are gestures that can make or break a child. In this case, it can break their self-esteem, the little confidence a child like Ini is trying to build.