Victoria Anne's Story---Submitted by Susan Leonett
In May 1992, I became pregnant for our 2nd child. I was 31 yrs. old. My husband was reluctant to have another baby because you see, our 1st child (Michael) was born with a left club leg and had to go through several surgeries and casts. Tony never did handle stress well and didn't want kids in the 1st place. He later proved this and I am now a single Mom! Anyway, my AFP test came back high so they requested that I have an amnio and an grade 2 ultrasound done. I agreed due to Michael's problems and Tony's family trying to convince me that if indeed it was handicapped that I was to abort the baby. The ironic part about this is that I am a Special Ed. teacher who was teaching SB kids at the time I was pregnant. The test was HORRIBLE! I didn't watch that BIG needle, but I felt EVERYTHING! and later had false contractions for 3 days due to my uterus flipping out! I had to be wheeled out of the hospital because I fainted in the bathroom. We all waited that horrific 2 wks. to get back the results that said that I was having a girl who was in perfect health and was not to worry about anything! I had a great pregnancy, although I knew nothing about folic acid and took only the required prenatal vitamins! Till this day I question whether this would have had an effect on the fetus had I taken extra folic acid??? SO....On Feb. 23, 1993 I delivered a beautiful 7 lb. 10 oz. baby girl named Vikki. She was born in Hackettstown, NJ . They didn't let me hold her for 10 mins. because they feared that I couldn't handle seeing the large grapefruit size mass on her back. I knew right away the diagnosis, but no one was saying anything except that she would have to be rushed to NYU Tische Hosp. immediately to have surgery by Dr. Fred Epstein. Thankfully, my pedi. had studied with him and was able to get her in.
Five hours after delivery, she was taken by ambulance to NY with her father and grandparents. I remained in the hosp. That was a terrible night! I spent the whole evening crying at the nurses desk. The next day I went home to an empty crib.
Vikki could not move anything from the waist down. Her sac was closed so they waited 9 days before they did surgery because they felt she was in no real danger. I went to NYU every other day to spend time with my little girl. She was gorgeous. Dark brown hair and BIG brown eyes. She was my Queen Victoria. Day 9 she had her 1st surgery. She had a myelomeningocele with a L2-S1 lesion. It was one of God's little miracles that Vikki began to move her legs shortly after surgery. The docs. don't really know how the outcome will be. Our biggest fear was that she would lose more function than she already had. Thanks to God and his doctors, they did a wonderful job of closing up her back. She was in the hospital for 1 month and during that time we met with SO many other doctors and were told that she had a 30% chance of ever walking and would probably develop Hydro. due to build up of CSF. Her future looked uncertain. I handled it better than Tony did. Oh! I cried that month, but I think that most of it was because I couldn't be with her. I knew that when I could bring my baby home, everything would be alright! I remember feeling upset that everyone was saying they were "SORRY" ! This really bothered me ! Here I had just had a beautiful baby and all everyone could do was feel sad for us! I wanted to hear "CONGRATULATIONS" and all I got were condolences. A baby is a miracle ! Tony just shut down more.
On March 11, 1993, Victoria Anne Leonett came home! We started her in EIP classes immediately! She was so tiny and everyone loved her! I met with another Mom who had a little girl with long golden locks that had SB too. She helped to get me started with SBANJ and taught me a lot! We are still good friends and I will always thank her for helping me through the ups and downs. I have met so many wonderful people. Vikki grew beautifully. With PT and all the other therapies, she crawled at 13 mos. and walked at 19 mos. To think that they gave her a 30% chance of ever walking! Dr. Epstein still can't believe his eyes when he sees her! She wears no braces and never developed hydro. That 1st yr. I didn't catherize her because she was tested upon discharge from the hospital and had no reflux. She had a VCUG and Renal scan done at a year old that proved she now had a grade #4 reflux. Dr. Moneer Hanna reimplanted her left ureter but her kidney was already destroyed. I then began cathing her every 3-4 hrs. She also cannot empty her bowels. We are currently working on a bowel program. So far she has had no more surgeries and is doing well!
Vikki is a spunky little girl! I thank God everyday for her. I know that he gave her to me because I too am special. Both my kids have their problems, but we handle them together! Today Victoria is 6 ½ and attends a regular 1st grade class. Vikki has recently learned to self cath. I am so proud of her. I now feel like she is "Potty trained." She continues to need a better bowel program. No success there. No P/T anymore. School feels she doesn't need it. I on the other hand disagree. I will be looking into private PT. But she is monitored very closely. She is very bright for her age. She had no problems completing Kindergarten.
Michael just turned 11 yrs. Old. He tries hard in school and maintains a passing grade. He continues to struggle with ADHD. He too is very bright when something sparks his interest. I have had several section 504 meetings but the teachers still have problems handling his fidgety, unorganized, allover behaviors. I am REAL nervous about the whole thing but I know that everything will work out, because I keep Jesus in my heart and I keep on trucking. Life is GOOD!
Update: Jan. 3, 2005
WOW! Where did the years go? Let's see what has happened since I last wrote this.
My son Michael is now 16 and he is hanging in there at school (11th grade). He continues to struggle with his ADD stuff and just being a teen. He has had no problems with his left foot/leg, other than dealing with it's limitations and lack of muscle in the calf. He's embarrassed in shorts. He handles it well though. He's ALWAYS a challenge! But I love him so!
Victoria will soon be 12. She became a women this past summer and has developed to look like a 15 year old. She is beautiful! We haven't had any major surgeries or hospitalizations since she was a year old. God has truly blessed Vikki. She hasn't been on meds for about 2 yrs. and has stayed relatively healthy. She did develop an increased scoliosis (26 degrees) this past year with the MAJOR growth spurt she had. She will be wearing a body jacket for at least 18 months. She wears arch inserts in her shoes and a night brace on her left big toe that has developed crooked. She self-caths about every 2-3 hrs. and digitally removes her poop daily. She wears pull-ups at night and incontinence pads in her undies during the day. She has developed over the years a latex allergy, but, "Thank God" we have never had to use the Epi pen in my purse. We stay clear of balloons and gloves. I am at the point of making her soon-to-be H. S. Latex free! Always a new challenge. She is simply amazing and really a happy kid! We are EXTREMELY close and love to sing in the church choir together. She is also on the honor roll & citizenship at school. She is my hero!!
Thanks for letting me tell my story.
From a Proud mama,
Susan E-mail
SueLeo2@aol.com
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