10/31/2020 3 Comments Sarah’s Spina Bifida Story✒️Sarah Emma Avram was born with spina bifida and hydrocephalus, neither by accident nor by luck as some people have said. She is the child that we had been praying for and we received her as a blessing, our first gift from God into our family, in March 17, 2006 (on St. Patrick’s Day), at Loma Linda Children’s Hospital in California. I wrote her name in my Bible even before she was conceived in my womb.
Here is Sarah’s spina bifida story: Sarah is our first child, the child my husband and I prayed for. See, we asked God for a child, but we didn’t ask Him how our child would be. In the very beginning of my first trimester, due to a kidney infection and some previous complications including bleeding, I was admitted at Redlands Community Hospital where I was told I might have an ectopic pregnancy. The medical staff recommended an abortion since they couldn’t find the baby’s heartbeat. I requested a second doctor’s opinion. Before some more tests I was told that an ectopic pregnancy could put my life in danger, but praise God on that second day of being in the hospital under kidney treatment with antibiotics and under pregnancy investigation, Sarah’s heartbeat was found and no surgical intervention was needed. After my kidney infection healed, I was continuing treatment at home as I was transferred to a high-risk pregnancy specialist in Loma Linda for follow-up. When the time came, as any other parents would be, we excitedly went to our ultrasound appointment to find out if our first baby would be a boy or a girl. That was the longest and the quietest ultrasound I have ever had. The doctor and nurse stepped in and looked at the monitor while they started sharing the list of complications that comes with spina bifida. I had never heard of spina bifida or knew anyone who had experienced it. We were a little scared when we first heard that Sarah would have water in her brain, that her blood didn’t match mine, that she would not be able to walk, and all the other complications that would follow if we said “no” to an abortion. I felt very anxious, but not hopeless. I imagined for a moment that my baby would look like a monster, but an abortion was not an option for us! When we heard the word “abortion,” I heard my husband’s voice whisper as he was holding my hand, “She is our baby girl and we will love her no matter what or how she will look!” From that moment on we never felt alone in the situation. The relationship between my husband and me, and between us and our Creator, grew in such way that this trial only made us stronger. We are thankful for all the nurses, doctors, and surgeons that came across our path. Our life and priorities changed completely. Doctors explained all the surgeries Sarah would have to go through and prepared us for the worst case scenarios of receiving a baby with spina bifida. They told me she would not be able to walk and would need several surgeries on her brain due to the water she accumulated, but no one could tell me exactly how my baby would look. I started to research more and more about spina bifida and hydrocephalus. I had friends helping to drive me to the hospital so my husband could go to work to provide for our family. Sarah was scheduled to arrive via C-section a few days before her due date, but she decided to come a week earlier than expected. Right after the C-section she was taken away from me and placed in another room to get prepared for spinal surgery. I can’t describe what was in my heart at that time. All I could do was cry and wish that I could take all my daughter’s pain and have my body cut instead of hers. The only thing I wanted at that time was to see and to hold my baby! Considering the circumstances, my husband got to be with me the entire time and got to see Sarah and take pictures of her immediately as she was prepared for her back surgery. I was praying and crying in joy over my digital camera as I was watching my baby girl’s pictures. When she was one month old, she had her first (and only) VP shunt placed in her brain. Despite pain and challenges, Sarah was a very strong and happy baby. As she grew up she kept her positive attitude and was always pushing herself beyond any limits. Sarah is God’s living miracle on this earth. We haven’t missed any physical therapy or doctor’s appointments. Sarah started walking with leg braces (another answer to my prayers) when her little sister, Naomi, was born. We don’t know what caused spina bifida in my case, but as a mother who wanted more children after Sarah was born, I was prescribed to take a daily double-dose of a folic acid supplement to prevent spina bifida. So my second precious baby girl was born healthy. We love our girls so very much! We are thankful for Dr. Rao Ravidra and the spina bifida team of doctors who we follow up with every year. Sarah is now 11 years old and a 6th grader at Inland Leaders Charter School. Even if she doesn’t feel her legs from her knees down and has zero sensitivity in her toes, Sarah never lets spina bifida bring her down; instead, she is thankful that she can walk. Sarah loves school. She is a very competitive student who receives outstanding academic achievements, special recognition for leadership helping the local community and reaching out to the spina bifida community, and helping disabled and underprivileged children in Romania through Harvest of Joy Ministries. Sarah has a love and joy that I wish everyone would have. She likes to write (she has very neat handwriting), she loves singing, playing tennis, swimming, racing her bike, watching movies, traveling, and sharing light all around her. When she grows up she wants to be a pediatric doctor and she knows she can do that better because she will be singing to the children while helping them. She has been singing since she started to talk. She currently takes voice lessons at Psalm 33 Music and also studies music and takes canto lessons at a different level (along with her little sister and her best friend) at Redlands Conservatory of Music. I see in my Sarah a miracle and a brave girl. We all know that spina bifida doesn’t have a cure and so children have to go through painful surgeries and sometimes feel embarrassed as they find themselves in different situations while in school or public places. They are facing challenges at different levels than the rest of us. Sarah always endures her pain and often hides any embarrassment she faces, but this is why the Lord placed her in my life so I can be there for her and remind her how loved and precious she is. If I were to be asked to change something about the past, I would change nothing except that I would want to suffer the pain that comes with spina bifida, instead of her. We can’t change the past, but we are all called to embrace our differences with love. We can spread awareness and encourage each other; we can run and fight together for a change. In a divided world, our story is here to bring encouragement to some readers who need to be reminded that children born with spina bifida are a blessing, not a curse. People with spina bifida have so much love to give, but sometimes they can’t find receivers for their love. We live in a country where we talk about many other forms of disabilities and cancer that takes our loved ones away, but we need more people to team up with us to spread awareness about all the endless ways to educate others on how to relate to a friend or a relative that faces spina bifida and hydrocephalus. A cure may or may not be found for spina bifida, but through prayer and some research, people effected by spina bifida can have a better quality of life. At first sight, people may see those who face spina bifida and they may view them as either a weak or strong disabled fighter, but there in front of them might be a future doctor, engineer, teacher, star, world evangelist, artist, and even president. In the weakest moments in your life, remember that the story of your life is not defined by the cover of your book. Your story is still unfolding. You are not alone! You are created by God with a purpose! You are precious and loved! “For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.”-John3:16 I pray the Lord will use our story to bless others. “For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them.” - Ephesians 2:10(NKJV) Written with love by Alexandra Avram ; edited by Erik V. Sahakian-Harvest Publishing. Article was published in Spina Bifida Association for the 2017 Spina Bifida Awareness Story book.
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AuthorAlexandra Avram Archives
October 2020
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