‘Down syndrome shouldn’t chart my son’s life,’ a mother shares her inspiring story

The author with her family and baby Nathan. Photo courtesy of Cher Jimenez.

The author with her family and baby Nathan. Photo courtesy of Cher Jimenez.

I’ve always wanted to have a baby. For some reason I know I’m going to be a mother someday.

Nathan was a product of an answered prayer and a planned pregnancy. At 43 and while my husband and I consciously made efforts to conceive, we were immensely surprised when the pregnancy test kit showed two red lines.

As a Christian, I would like to believe that I have a bold faith. I am humbled whenever I declare God’s favor in an area that looked impossible and it actually happens. It may sound weird but I spoke to Nathan even before he was conceived.

Being in an advanced maternal age, pregnancy was not a walk in the park for me. I worked until my last term and experienced all discomfort and pain associated with carrying another life in my body. But I didn’t mind all of these. I was just consumed by the baby’s presence inside my belly that I even wrote him letters hoping he would read them someday.

Nathan was very active in the womb. He kicked in all directions and responded mostly at the sound of music. I was so sure everything was fine until he was tested for possible Down syndrome.

My husband and I were devastated when the doctor informed us that my baby’s risk for Down syndrome was high. In Australia, parents are offered further tests and a choice to terminate the pregnancy if the baby has a high risk for this condition. We didn’t take any of them believing that our child would be ok. Neither of us had any family member with Down syndrome. Surely it can’t happen to us. We decided to keep the baby as there is no way that we would choose to terminate my pregnancy.

The baby was born on December 11, 2016 twenty days earlier than the due date. We named him Nathaniel Andrew. Nathaniel is a Hebrew name meaning God-given while Andrew means strong or warrior. I can’t describe my immense joy when I first saw and held him, I forgot I went delirious in labor.

I was alone in my room when his doctor came and informed me that Nathan’s test for Down syndrome had come out positive. My heart sunk and my mind blew in tiny pieces as she confirmed what I’d feared all along. I waited for everyone to leave the room before I sat on the bed and let all emotions loose like I’ve never done before.

It can’t be true. Perhaps they committed a mistake. Nathan was a promised child from heaven, God would make sure that nothing was wrong with him. No, I demand a second test.

The doctors said as a baby with this condition, Nathan was likely to have a heart problem and other health issues associated with his thyroid, hearing, and feeding. He didn’t have any of those issues. I was convinced that they made a mistake.

My mind raced to the future. How am I going to raise my child knowing that he has special needs? How will I respond when people treat him wrong? Can he live independently or will he be reliant on others? Will he marry? Who will take care of him when I’m gone? I was full of fear and concern for my child. I was inconsolable and for many nights I just held him tight and cried quietly while begging God to reverse his condition. If God can raise the dead, surely he can change my boy’s condition.

Having a child with Down syndrome can present both personal strengths and weaknesses you never knew existed. It also revealed my ignorance of this condition.

Down syndrome is a genetic condition, not a disease or an ailment. It happens when there are 47 instead of 46 chromosomes in the cells and can cause mental disability. I realized I have very little knowledge of this condition despite covering the health beat for many years.

Nathan is considered by his doctors as a miracle baby. Photo courtesy of Cher Jimenez.

Medical doctors call baby Nathan’s development a miracle since he achieved certain milestones that ‘normal’ babies could achieve at a later period. Photo courtesy of Cher Jimenez.

As a mother nothing can be more devastating than knowing you can’t spare your child from life’s pain and uncertainty. But Nathan is no ordinary child. He may have Down syndrome but it doesn’t have to define him as a person or chart his life. Doctors call his development a miracle as he defied indicators expected of a baby born with this condition. He breastfeeds and never lost weight. He flipped to his back while having his tummy time at five weeks when “normal” babies do this at four months of age. He can hear and responds when we talk to him. He can also lift his head when doctors expect him to have weak muscles.

We are fortunate that we live in Australia where support for babies born with Down syndrome and their families is strong. Nathan is regularly visited by a maternal and child health nurse at home, has been assigned a team of other health professionals that will see him through as he grows up, and was enrolled in an early childhood intervention program to prepare him for independent living. Studies have shown that family and community support are vital to help babies with Down syndrome live a “normal” and functional life.

Today my husband and I are simply enjoying the family that we created with Nathan and my stepson, Sam. I know that there will be many challenges along the way but I believe my son, with God’s grace, will survive them all. Everyday while feeding him I declare who Nathan is in God’s eyes because I believe that he can hear and understand me. I know I can’t protect him from other people’s judgement but I believe that he can confidently walk through life when he knows who he is. When I look at Nathan I don’t see a child with Down syndrome. I see my beautiful baby. And that’s how it will always be.