The first time I saw my granddaughter Franchesca, she was two years old. Her mother was a single mother when she met my son Aaron. And they fell in love and they were married right away. Gladys my daughter in law says that’s the best thing that ever happened to her besides having her children. I disagree this is one of the best things that ever happened to me besides having my children.
Franchesca, we call her Franny was the cutest two year old little girl I ever saw. With the biggest brown eyes with dark brown hair.
Aaron and Gladys were having their second child now. Her name is Jessica. I kept thinking these kids are getting more beautiful every time.
It was my job to take care of Franchesca while her mom was in the hospital having her sister. For two weeks it was just me and Franny. I fell in love with this child. She had the strongest arms I noticed but I couldn’t figure out why she was still crawling.
I would take her to church with me. I carried her in and she sat on my lap and she would hold my bible. Her smile was always so contagious. She was very shy but laughed all the time.
Finally one day after the new baby Jessica was home I was watching Franny crawl. I looked at Gladys and asked her why doesn’t Franny walk yet?
“She was born with Spina Bifida.” Gladys told me this and I looked at her and thought to myself. What in the world is that? According to the doctors Franchesca shouldn’t have lived past 6 months old. Well they didn’t know what prayers and the love of Jesus could do. This child has had so many prayers from day one and double the prayers when I met her. She is nine years old now.When she was five she was given a birthday party unlike I had
ever seen before. Her mom Gladys got up and made a speech
She was crying and praising God that we still had Franchesca.
What a miracle child she is.
We were so blessed to have her with us.
.This past year I was at Franny’s school with her mom the teacher told us how one of the children was making fun of her. The child got in trouble for what she had done. When we asked Franny about it she told us it was all right the girl was still her best friend. What love. This child loves everyone no matter what. She puts us grownups to shame. All I know is when she puts her arms around my neck and kisses me and tells me she loves me nothing else matters. I thank God every day for our Franny. Franny has too take medicine three times a day or she will go into convulsions.
She has been operated on so many times in her young life.
Franny, had to had special surgery’s just to stay alive, one of the surgery’s
was to help her grow.
We learned Spina bifida affects the entire family, and meeting the needs of a person affected by spina bifida involves the whole family and can be challenging at times. However, find resources, knowing what to expect, and planning for the future can help you.
New parents often feel many different emotions―such as love, joy, happiness, worry, and exhaustion. The same is true for parents who have a child affected by spina bifida. However, in addition to adjusting to life with a new baby, parents of a child with spina bifida also need to learn as much as possible about the condition to prepare for the needs of their child.
When Gladys found out she was going to have a child with spina bifida, it was very overwhelming. It was important for her to know that most children born with spina bifida reach their full potential.
It is very important for parents to take an active role in managing their child’s care. Parents need to know about spina bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child and parents should talk with a health care provider about any questions or concerns they have.
No two children with spina bifida are exactly alike. Health issues will be different for each baby. Franny had issues that are more severe than other children. With the right care, children born with spina bifida will grow up to reach their full potential.
When a baby is born with open spina bifida, in which the spinal cord is exposed (myelomeningocele), doctors will perform surgery to close it before birth or within the first few days of the baby’s life.
Many babies born with spina bifida get hydrocephalus (often called water on the brain). This means that there is extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.
If a child with spina bifida has hydrocephalus, a surgeon can put in a shunt. A shunt is a small hollow tube that will help drain the fluid from the baby’s brain and protect it from too much pressure. Additional surgery might be needed to change the shunt as the child grows up or if it becomes clogged or infected.
People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs, which Franny uses all of these.
People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.
Doctors can start treatment for movement problems soon after a baby with spina bifida is born. A physical therapist can work with parents and caregivers to teach them how to exercise a baby’s legs to increase strength, flexibility, and movement.
Regular physical activity is important for all children, especially for those with conditions that affect movement, such as spina bifida. There are many ways for babies with spina bifida to be active.
Gladys found to participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities, which is a free program in many communities.
And she has to do exercises recommended by a physical therapist.
Babies with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. Parents and caregivers can help protect the baby’s skin by:
Checking the child's skin regularly for redness, including under braces.
Please try to avoid hot bath water, hot irons and hot or unpadded seat-belt clasps that may cause burns.
We have to make sure Franny doesn’t stay out in the sun too long.or make sure Franny is not sitting or lying in one position for too long.
Many children with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. For Franny we found this would include rubber nipples and pacifiers. T.
Every child needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). The primary health care provider will want to make sure that the baby is healthy; developing normally; and receiving immunization against diseases and infections, including the flu.
In addition to seeing a primary health care provider, shortly after birth the baby will be checked and treated as needed by doctors who specialize in different parts of the body. These doctors might suggest treatments or surgeries to help the baby. We have experience that Franny would need n orthopedist, who will work with the her muscles and bones. and urologist, who will check the her kidneys and bladder. and we realized she needed A neurosurgeon, who will check the her brain and spine.
Gladys found out she had the support and community resources that could help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family members. It might be helpful for parents of children with spina bifida to talk with one another and Gladys has met others with children with the same illness. One parent might have learned how to address some of the same concerns another parent has. Often, parents of children with special needs can give advice about good resources for these children and I am so proud of Gladys that she has learned how to take care of her daughter and now she is taking up nursing.
Remember that the choices of one family might not be best for another family, so it’s important that parents understand all options and discuss them with their child’s health care providers.Because of this Gladys has found our that Franny needs three therapy three times a week, which Franny has been doing for years now. She is the strongest child I have ever met.
Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time. Children who feel good about themselves are more able to resist negative peer pressure and make better choices. Franny has been going to school since she was three years old. This has helped her learn how to take care of her self.
This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.
Major birth defects are conditions that cause structural changes in one or more parts of the body; are present at birth; and have a serious, adverse effect on health, development, or functional ability.
We found that about one in every 33 babies is born with a birth defect.1 Birth defects are a leading cause of infant death, accounting for more than 1 of every 5 infant deaths.2 In addition, babies born with birth defects have a greater chance of illness and long term disability than babies without birth defects.
In addition, Franny is the love of our lives she is so beautiful. No one or nothing can replace this child.
I thank God for Franchesca every day.
©Copyright 2011 by POET DEBORAH BROOKS-LANGFORD
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