My son has Trisomy 18, and he is a three-year-old miracle

Disclaimer: The opinions expressed in this guest post are solely those of the guest author. Minor edits have been made for clarity.

I have an amazing son named Andrew, but everyone knows him as Andy. He’s a three-year-old miracle baby diagnosed with a rare genetic condition called Trisomy 18.

Trisomy 18 is where the 18th chromosome has three copies instead of two like a typical person would have. Some of us in the Trisomy community call them “extra chromie homies.” If you Google this diagnosis, the results are pretty much all negative. We are here to show the world that a child diagnosed with Trisomy 18 (otherwise known as Edwards Syndrome) truly is compatible with life, when aggressive medical intervention is used appropriately.

Every cell in Andy’s body is affected by T18, meaning he has full Trisomy 18. He has many different diagnoses that branch off from having this genetic condition. And he is absolutely thriving thanks to other trisomy parents who have helped us along the way, and because his dad and I have advocated for him and have not taken “no” for an answer. We have traveled hundreds of miles away for fair care, and we are heavy in therapies, unconditional love and devotion, and aggressive medical intervention — including but not limited to major heart repair surgery at four months old.

Andy was born weighing just 4 pounds and 5 ounces and measuring 16 1/2 inches long. He was born breathing on his own but could not keep his oxygen saturation up, so they gave him oxygen immediately after birth and intubated him shortly after. He had his first surgery at only a few hours old, to repair his omphalocele, a sac containing his intestines. He rocked that surgery.

He also was born with heart defects, which were holes in his heart and other heart issues, and was in heart failure. He also had brain defects, and he was just under two weeks old when we were told he wouldn’t receive heart repair surgery because of his brain. Andy had premature lungs and chronic lung disease, and he was intubated for a little over two weeks, with a tube down his throat and a ventilator breathing for him. After three failed attempts to remove the breathing tube, the fourth time was a charm. He then weaned down to BIPAP, then CPAP, then high flow. That’s what he went home on. After two months of being in the NICU he graduated!

He has always fought so hard. He went on to have his heart repaired at four months old. Our home hospital denied his heart repair surgery, so we flew to Cincinnati Children’s in Ohio, and only two days after being there Andy got his heart repaired! We drove him home to Georgia six days later. We are so grateful to Cincinnati Children’s for saving our boy and giving us a wonderful life with him. Then after two long years of being on oxygen 24/7, his lungs grew strong enough to breathe on their own with no support.

I can vividly remember the first time I heard the words “Trisomy 18.” I can remember laying on the table and the ultrasound tech looking so concerned during my ultrasound. She left the room and came back in with the doctor. As I laid there on that cold table in fear of what was going on, he began to explain to me all of the defects they had seen. After he explained and showed me everything that was wrong with Andy on the screen, he told me an amniocentesis test was necessary.

I did not know then what I know now. So we proceeded. I can remember crying my eyes out in fear as they pushed the long needle into my pregnant belly where Andy was.

They told me that Andy had no chance and would die either in my womb, or as soon as I gave birth, or shortly after. They tried to talk me into a medical termination due to the many defects they saw. It was the first time I had ever even met this doctor, and he told me all of these things. It was one of the hardest things I’ve ever been through.

I refused a termination and never went back to that clinic. I am so glad he was wrong. Three years later, and my Trisomy 18 child is thriving. He is so dang strong.

These days, Andy is doing amazing things. He’s learning to communicate with a tobii Dynavox eye gaze communication device. He’s weight bearing and standing up with minimal assistance. He’s working hard in his gait trainer to take steps, and he loves to crawl/knee walk in the gait trainer we have fixed for him to be able to do these things! We spend a lot of our free time going to his big brother’s basketball games, and Andy is his biggest cheerleader.

My son was born missing his radial bone in his left arm and a piece of radial bone in his right. This does not define him or hold him back at all. He has learned to compensate and use his limbs functionally. He doesn’t know anything different — that’s the beauty of it all. To him, it’s not a setback. He loves his life and he is amazing.

Doctors told me that having a special needs child negatively affects siblings. They were so wrong. His big brother loves him so much. They have a beautiful bond, and Gabe has made it a point to ask me and want to be involved in Andy’s medical care. So I taught him all of it. He changed out his first g tube recently! He also chose to do the most admirable thing possible in front of his whole class, and he wrote an essay for school about Andy and all special needs children/people with disabilities.

There is so much hope in this diagnosis. In my pain I found my purpose. In my trials and tribulations I found triumph. And with fighting for my child, I found a love greater than anything I have ever known. Andy is one of many who are living and thriving with this diagnosis.

There are not only children but many adults who are having fulfilling and wonderful lives who are diagnosed with Trisomy 18. And we can’t forget about our Trisomy angels, who will be remembered forever and whose lives mattered and carried so much purpose and meaning. They are all truly compatible with and worthy of life.

It is truly amazing what a parent will do for his/her child. (This even extends to the dopey parents whose child commits horrible crimes: many of those parents even deny that the child is capable of such things.)
Thank God for His grace to do the hard work of caring for those who have such conditions and challenges.

When you have a child with a chronic condition from birth the doctors can tell you about how many hospital stays they will need during their childhood. They can tell you many of the challenges that your child will face growing up. They can describe much of the pain that your child will endure. They can estimate how delayed your child may be or how limited they will end up.

They CANNOT tell you what games your child will play with their siblings. They CANNOT tell you what it feels like the first time they laugh out loud. They CANNOT tell you what it feels like when typical children befriend them and treat them kindly. They CANNOT tell you what kind of sense of humor your child will have or what fun hobbies you will share with them. They CANNOT tell you how sweet and kind your child will end up being.

We all have challenges and we all have blessings. Doctors may be pretty good at predicting one of those things but they are completely incapable of predicting the other.

Look to doctors to patch you up but don’t look to them for answers on matters of ethics, morals or happiness.

Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.