Madison's Page!

   


1. Madison in the pool w/ Aunt Cristin
2. Madison  in the pool, with Daddy at Pappy and Grammy's
3. At Niagara Falls, with sisters, Aunt Cristin and mom.
Photo taken summer 1999

Update: She is now walking with armsticks and is on a good bowel program so she now wears under wear!

Madison Divine's Story--submitted by her mom Nanci Insco

My husband Phil and I have been married for 11 years and have 3 beautiful girls (everyone says so!) Jerrika is 10 yrs, Kelsey is 9 and Madison is 5 & 1/2.

This is the story of the youngest and how she changed our lives. In February of 1993 I became pregnant with our long awaited 3 rd child. After over a year of trying we had just about given up, and then it finally happened. We were thrilled and the pregnancy progressed smoothly, except this time I found out what morning sickness was all about! In August a routine ultrasound showed that I was carrying another girl. I am ashamed to admit that we were a little disappointed at the time, we had hoped for a boy. That feeling quickly passed as a radiologist was called in during the ultrasound. Priorities can be crystal clear in an instant. He told us our baby had a cyst on her spine. I immediately thought of spina bifida because my cousins child had been born 6 months before with it. I remember distinctly being told, " No, no just a fluid filled sac, not spina bifida" Still we were devastated, how could this possibly happen to us? We did all the right stuff, all the same things we had done during my other pregnancies. How could this happen to our family? The search for information began and that kept us focused. We constantly told each other, "we can do this" Within a week we had seen a high risk OB in Louiseville, KY, 4 hours from our home, and had a more in-depth ultrasound. The diagnosis was indeed Spina Bifida plus hydrocephalus. We met our daughters future neurosurgeon and he gave us hope for a normal life for her. We prepared ourselves as best we could with the information we had.   I had always been impatient in the last wks of my pregnancies but with Madison I knew that the minute she was born she would be subjected to tests, surgery, pokes and pain. I wanted her safe inside me for as long as possible. Where as my other 2 were wks late, Madison came 3 wks early, 2 wks before my scheduled induction, and I had to be flown to Louiseville for the delivery. My husband drove 4 hrs like a mad man only to wait another 12 hrs until she was born at 12:42 on 10-09-93. She weighed around 5 &1/2 lbs (w/ moist sterile drsg. on her back) I saw her for only seconds before they whisked her across the ped way to NICU. She was strong, her apgar was great and she was in no immediate danger. Phil ran that pedway many times that night, delivering news to me. By the way, I am the exception to the rule, I delivered Madison vaginally on the advice of the high risk OB. I now regret that we didn't fight that decision because it is so widely thought C-sections are less likely to cause more damage to exposed nerves than a vaginal delivery. But that was back before we questioned Drs. infinite wisdom. There is no going back and no way to know if she would have fared better if delivered by C-section. We were now bombarded with the answers to all the questions we had asked during the pregnancy. Her level was L2-3, her hydro was mild and she had no movement below the waist. After her back closure the neurosurgeon told us that she would never walk, she may not be able to sit independently and would be in a wheelchair for her entire life. Our hopes were dashed all over again and we cried more over that conversation than anything that has ever befallen us. We were already hopelessly in love with her and on our next visit to her the pain started to go away. She was so beautiful and delicate. We were just enchanted by her strawberry blonde hair and tiny perfect features. We both have dark brown hair, as do our older daughters and never expected a fair haired child. And she was so calm in the midst of the chaos of the NICU!! There were some surprises for us. Her legs were badly deformed, one knee bent backwards and both feet were so severely clubbed they barely resembled feet. How they missed that on those countless ultrasounds is beyond me. Maybe they thought we had enough to handle. During her 15 day stay in the NICU she underwent so many tests and procedures, she also had the VP shunt implanted at 10 days of life. She acquired new diagnosis's almost daily and for a week her weight steadily dropped. It was overwhelming but we felt so fortunate, many babies never went home. Madison went home after we spent a day being drilled on dressing changes and cast care (her legs were casted from the thigh down). I was so nervous, as if it were my first baby! Finally I could hold her when I wanted, for as long as I wanted, I could feed her, I was in charge-and I was scared to death. Madison thrived and was literally carried around on a pillow for hours and hours a day. I never whined about this child disturbing my sleep, I could feed my baby and not a breast pump and I was glad to lose sleep! Our home was invaded by therapists and early intervention and home health nurses on a daily basis. That takes some getting used to but I knew it was important and she received services from 3 weeks until 3 yrs of age in our home. Let me say here that the neurosurgeon was wrong. After the casts were removed she miraculously had good movement of her hips (which were both dislocated) and her knees! Not all that uncommon after the spinal cord has a chance to heal and swelling goes down. But to us it was a shock to see those little pink legs KICKING!

She also sat unassisted at 7 months and walked at 15 months with her walker and braces form the waist down. She was developmentally delayed, especially in speech but that is definitely not a problem now! We have no reason to suspect that she will not have normal-above normal intelligence but we are aware that there could be some learning problems down the road for her. Currently we have no reason to suspect any. She attends "regular" preschool and is very friendly and outgoing. She loves music and dancing with her big sisters and can ride a trike, roller-skate (w/ walker and a nervous mom right beside her!) and swim. She has graduated to wearing twister cable braces and we hope that some day she will use AFO's only. She still needs the walker but we hope to have her using Canadian crutches before Kindergarten. All this progress had a steep price for her. She has had 10 surgeries, spent 9 months of her life in a cast of some sort, over half of that in body (spica) casts. A lot of her surgeries were orthopedic corrections but she has also had tethered cord release and 1 shunt revision (she fell on a concrete floor at school and broke the shunt "housing"!)   It may sound pat but she truly is a joy. Her enthusiasm for life can be humbling to many people who are physically unaffected. We have had a lot of rough, scary times but we are fortunate that we have grown stronger through it. Our priorities have done a 360, we KNOW what matters and we ignore what doesn't. I am not shy anymore about expressing my opinions, I will fight for what I know is best for all of my girls. She has changed me and I'm pretty sure I needed changing. The future holds more trials for her, more ups and downs but we know we can help her through this, just as she helps us through the tough days with a smile or a silly song. If she can can meet her days with a smile and and find a way to do anything she really wants to do then the rest of us have no excuse NOT to, right?

Attitude is everything, love is more. (my favorite saying)
Nanci-proud mama      E-mail at: ninsco@hcis.net  

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