An amazing child with Down syndrome changed my life forever!

by Joanne Bastante-Howard

When I first supected that I was pregnant, I kept purchasing different types of pregnacy tests. I thought to myself, “this can’t be possible.” I must have taken at least three different tests to validate that at 40 years old, I was finally carrying my long-awaited baby.

Twenty weeks into my pregnacy I went to my doctor for the standard blood work and an ultrasound that determined I was carrying a little boy. I left the office with John Joseph “JJ’s” first picture and my heart racing with excitement. I couldn’t wait to begin planning for my husband’s name sake. Nothing could have prepared me for the news that awaited me.

A week later, my doctor’s office phoned and asked me to come in to discuss my blood work. By the sound of the nurse, I began to feel uneasy. When I arrived at the doctor’s office my physician explained that the baby I was carrying had markers for Down syndrome, but he couldn’t be certain if my son had Down syndrome or another chromosome disorder (like Trisomy 18 or Trisomy 13). He continued to say that with Trisomy 18 more than 50% die before birth or shortly thereafter. If the baby had Trisomy 13 there was more than an 80% chance the baby would die right away. With these odds, he urged me to take an amniocentesis and consider ending the pregnancy.

I remember driving home in shock and terrified. I thought to myself that my baby was going to be fine. I went home and prayed and saught family and friends for love and support.

When I returned for my next doctor’s visit, I informed my doctor that I was not going to take an amniocentesis test nor was I going to terminate my son’s life. I waited too long for this child. I explained that I had gone to a fertility specialist in NJ for 15 years and was told that I may not be able to have children. If God gave this baby to me, I was going to love him.

I remember the doctor mocking my beliefs and telling me that I had no idea what I was in for and that “the child would ruin my life.” Of course I had no idea what I was in for, but I believed then (and still do now) that every life is valuable.

I am so glad that I didn’t allow two different physicians or my spouse to stop me from having JJ. While it was a rollercoaster ride. I wouldn’t change a thing about my decision.

The entire nine months were emotional, but I felt and looked the best I ever did. When JJ finally arrived, I fell in love with him instantly. He didn’t move around much like other babies and he didn’t drink much milk either, but he was beautiful.

I remember feeding him from a dropper which gave him his first nick-name “baby bird.” My baby bird could only take a few drops of milk at a time, yet he was always so hungry. I had a gut feeling that something was wrong, but everyone kept assuring me that JJ was fine. He had Down syndrome. Be patient. I thought to myself even a baby with Down syndrome has to eat. Little did I know that the next five and half months were going to be terrifying.

JJ continued to be very hungry. Yet he could only drink 2 oz. of milk a sitting. He was almost 8 pds at birth, but was continuing to drop weight. I literally had to feed him around the clock even at 5 months. It wasn’t until he began to spit up blood that the physicians began to take notice.

After more than 6 hours of testing at the hospital, they finally found that JJ had a severe blockage. I was told the blockage was common with children who had Down syndrome. They also informed me that he should have been operated at birth. It was a miracle that he survived. If the surgeon didn’t open up the blockage, JJ would not have survived to the morning! I remember getting on my hands and knees in the waiting room and begging God to save my little boy.

JJ was hospitalized for a week. He had surgery for malrotated intestines, a blockage in his intestine and an appendectomy. I never left his side. Our bond grew stronger as each day progressed. My admiration for him grew as well. Despite the immense pain he was experiencing, I saw a sweet boy smiling at the nurses and phylebotomists as they kept coming in to take his blood. There were tubes and cords all around him. I would gently move them to change his diaper.

I knew that little guy needed me to be strong. In the midst of all the unknown, we needed each other. I began singing one of my favorite Beatles songs. I  changed some of the lyrics just for my amazing boy.

John Joseph, “I give you all my love. That’s what I do and if you saw my John, you’d love him to…and I love him. A love like ours will never die as long as I have you near me. Bright are the stars that shine. Dark is the sky. I know a love like mine will never die…AND I LOVE YOU.

 

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