One of the most terrifying things a parent can be told is that their new child is “incompatible with life”. But for countless parents across the world, that is exactly what they hear upon receiving a diagnosis of Trisomy 18, or Edwards Syndrome. This description persists because Trisomy 18 is known to be associated with life-threatening medical complications; babies that survive pregnancy are practically guaranteed to spend time in the Neonatal Intensive Care Unit (NICU). But should babies with Trisomy 18 really be described as “incompatible with life”?
Jennifer Thenhaus and her husband Andrew have five children. Their youngest daughter has Trisomy 18. During the pregnancy, they named her Melody after a family friend and because, even before birth, their little girl loved music. She would dance in the womb when their children would play the violin, as well as when she would hear the Eden String Quartet. Throughout the pregnancy, they had no idea she had Trisomy 18.
“In the first ultrasound they saw a small pocket of water on her brain (cyst), which can be a marker for Trisomy 18,” Thenhaus said in an interview with Live Action News. “It was our understanding that if that was the only marker there was almost no chance of Trisomy 18. In the second ultrasound there was mention of the fact that she was small, but nothing too alarming.”
It wasn’t until Melody was born that they began to realize that something was wrong. She did not open her eyes, cry, or move. They waited for doctors to run tests to confirm the diagnosis, but doctors told the family that they believed Melody had Trisomy 18. There was one moment that gave the couple some hope, though. On Melody’s website, they explained that her love for music came through again.
“That evening my husband decided to play music from the Eden String Quartet on his phone. All of a sudden we saw movement in Melody’s little isolette,” Jennifer Thenhaus wrote. “Little toes wiggled, hands moved, and then eyes popped open! The nurse came rushing in exclaiming, ‘What is going on in here?’ Melody’s heart rate had soared. Apparently her hearing wasn’t a problem! This incident was a significant gift from the Lord that gave us a glimmer of hope. It further confirmed that her name fit her perfectly.”
A few days after she was born, the diagnosis was confirmed.
“Three very somber doctors entered our room and got right to the point,” Thenhaus said. “They confirmed that Melody had Trisomy 18. The picture painted was grim. They did give her emergency care in the hospital, but then they sent her home on hospice with no expectation that she would live.”
But the doctors couldn’t have been more wrong.
Today, Melody is a happy, thriving four-year-old girl who is very much loved by her family. And daily life with her is much more normal than people might expect. “We homeschool, so Melody’s siblings are at home and able to spend time with her, read her books, help feed her, help with her exercises, etc.; all the kids genuinely enjoy playing with
“We homeschool, so Melody’s siblings are at home and able to spend time with her, read her books, help feed her, help with her exercises, etc.; all the kids genuinely enjoy playing with Melody,” Thenhaus explained. “Our morning starts preparing her food and feeding her. After that she plays on the floor, sits on our laps, reads books, does her exercises. She eats a couple more meals before dinner, as well having an afternoon nap. We have a lot of family time in the evening. We eat dinner together, and she joins us at the table in her little booster chair. Then we do family devotions. She usually sits on someone’s lap during that time or plays on the floor. Then we have ‘talk time’. During that time my husband reads to our son, while the girls pile on our bed and we talk, laugh, tell stories, etc. Melody loves that time. Then she goes to bed.”
Medically, Melody is also doing extremely well. So far in her life, she has not had to have any surgeries, does not have to take any medications, and is not dependent on medical equipment for daily use. She has had some health issues — notably, severe sleep apnea and scoliosis.
“For the first two years of her life she could have died every time she went to sleep,” Thenhaus said. But with the help of medical experts, Melody does not appear to have sleep apnea anymore, and her spine is almost straight. She can now sit up and stand with support. And her parents say that her cognitive capacity is constantly increasing. And it’s all because of physicians who have been willing to think outside-the-box.
“It is entirely absurd to label them ‘incompatible with life’,” Jennifer said of children with Trisomy 18. “They are certainly more vulnerable, more delicate. As parents, we have had to seek the Lord for wisdom at every turn with Melody. Yet He has been faithful to direct our steps.”
Labeling babies with Trisomy 18 as “incompatible with life” is extremely problematic.
“We are sensitive to the fact that many of these children will have challenges that do not allow them to live very long. Yet when they are labeled ‘incompatible with life’, tragic results ensue, and these little ones are robbed of the opportunity to have any hope of living,” Thenhaus said. “The first danger is the propensity for the medical community to pressure for abortion. The picture painted for a baby in the womb with Trisomy 18 is grim and horrific. Sometimes I wonder if these parents feel like they have an alien in the womb. It dehumanizes these little ones. They are precious little babies who need love and tender care like any other child. They will need more support, and they will be more fragile. Yet, they need us to ‘take their hand, not their life’.”
In addition to dehumanizing these babies, Jennifer also pointed out that labeling them as “incompatible with life” can lead to a denial of basic medical care. “Medical practitioners throw in the towel and don’t try to help these children,” she said. “If a child is labeled ‘incompatible with life’, then there is no point in making any effort. Sometimes these babies simply need a little oxygen and a C-PAP. It is not uncommon for them to be denied these basic things.”
“Medical practitioners throw in the towel and don’t try to help these children,” she said. “If a child is labeled ‘incompatible with life’, then there is no point in making any effort. Sometimes these babies simply need a little oxygen and a C-PAP. It is not uncommon for them to be denied these basic things.”
And ultimately, while Melody does need more care than typical children do, she is still a vital member of the Thenhaus family and has enriched their lives for the better.
“We all love having Melody as part of our family and have grown and learned so much. Melody’s life has certainly brought trials, heartache, grief, and many tears, particularly for the first year and a half. Melody definitely requires more time to care for than most children. Yet we rejoice in seeing all that God has done in our lives through little Melody. She is a blessing beyond compare,” Thenhaus said. “At this point, Melody’s health is excellent. It is impossible to know what will take her. She is still more vulnerable than our other children, but we rejoice in her current strength and good health. Obviously none of us knows what a day may hold. Yet, we rejoice in each treasured day that we have with our sweet girl.”