My life with 4 lb., 14 oz. miracle baby with trisomy 18 – now 11
In 2013 our family received a gift. What some would have seen as a tragedy, turned out to be a treasure.
Melody entered the world at a mere four pounds, fourteen ounces, and was soon diagnosed with full trisomy 18. For the first twenty-four hours after her birth, she did not move, cry, or open her eyes. She did, however, wake up the next evening when she heard music by a group of sisters, the Eden String Quartet. She had responded to this music in the womb and hearing it outside the womb was no different. Immediately, her toes began to wiggle, her eyes popped open, and her heart rate soared. At that moment, we beheld a glimmer of hope for our little gift.
Melody’s diagnosis included significant holes in her heart and severe apnea. These are the two most common health issues for children with Trisomy 18. She was deemed “incompatible with life” and sent home on hospice to die. The grim statistics given to us stated that 95% of babies with trisomy 18 do not survive the pregnancy. If they survive, only 50 percent make it to the first week. Of those only five to 10% live to see their first birthday. We were given no hope.
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Melody endeared herself to the community around her. They were grateful for each day of her life. When she turned one, 300 people showed up to her birthday party. Melody continued to grow in strength. When she turned five, 250 people celebrated with her.
Melody is now 11 years old and is much stronger and healthier than was projected. Her heart healed with no intervention. Incredibly, she is also apnea-free with the help of a remarkable speech therapist. With no health issues other than scoliosis, Melody is thriving.
She draws the best out in others with her sweet and charming ways. This is a phenomenon I witness on a daily basis. People who meet her are enamored with her. She never causes mischief. She never hurts anyone. She never demands her way. She smiles, laughs, reads books, loves music, swims, drives her pink Mercedes, and has quite a happy life. She does have vulnerabilities when she is sick, but even then she does not complain. I do not claim it has been an easy road, but most things in life that are worthwhile require sacrifice.
Melody has changed the dynamics of our family. Her sweet presence is a continual reminder that each day is a gift. Her four siblings are united around the common goal of giving Melody the best life possible. She is at the heart of our home.
Melody has an extraordinary way of endearing herself to those she meets. One friend of mine shared with me, “Melody inspires me every day of my life.” Her chiropractor shared, “Melody’s presence in our office is nothing short of a daily miracle that touches each of our hearts profoundly.”
A remarkable perspective was shared with me by a fellow mother Heather Harrigan. After receiving a positive screening test of trisomy 18 for her precious daughter Gianna, she chose to cherish every moment. Not knowing how long her little girl would live, she would sit up late at night just to feel her every move. After surviving the delivery, Gianna held on for two days. Although Heather was clear that it was very painful to say goodbye to her, she shared, “I am so thankful for those two days.” Her perspective is humbling. She chose love over fear. She chose to treasure those two days as a gift.
Tragically, not everyone receives their little one with trisomy 18 as a gift as Heather did. According to one study, between 2005 and 2014, 94 percent of babies with an extra chromosome (Down syndrome, trisomy 18, and trisomy 13) lost their lives to abortion.
Every human being should be afforded the basic right to be protected from violence and bodily harm. We should not discriminate against human beings who have disabilities. Even when they do not have Melody’s quality of life, they are still deserving of our care and protection for as long as they live. Human beings are valuable based on who they are, not on what they can or cannot do. Children with an extra chromosome are no less human than any other child, and their weaknesses should move us to protect these little ones, not harm them.
Even if babies with trisomy 18 are only here for a brief time, we can choose to honor them with unconditional love, acceptance, and compassion regardless of their vulnerabilities. We can have the opportunity to hold them, cuddle them, and kiss them while they are here, just like we would any other baby. Whether they are here for eleven minutes, eleven months, or eleven years like Melody, we can choose to receive them as a precious gift.
Just because one has a disability does not mean she is less of a gift. She is just wrapped in a different package.
To follow Melody’s story, see her website at www.melodysstory.com.
Jennifer Thenhaus is a former lawyer and the proud mother of 5 children, including her daughter Melody.
