A Special Heart and an Extra Chromosome

Photo courtesy of Coco Photography

Ethan’s story started when I was nine weeks pregnant. Ethan was our third baby, so we were excited to add to our growing family.  Our excitement changed rather quickly when the doctor said, “I need to tell you that your baby has something called a cystic hygroma.” He sent us to a specialist at Magee, and they told us Ethan did have the cystic hygroma, a very large pocket of fluid all the way from the back of his head down to his little butt. The specialists at Magee gave us a 50% chance that he would survive the pregnancy and said this kind of defect is a red flag for a genetic issue in addition to it also causes heart failure. My OBGYN said in all his years of experience he had never seen this fluid resolve, but then he said something that I will never forget. He looked me straight in the eye and said, ‘I believe in miracles,’ and that has stuck with us ever since.

After genetic testing, we found that our son was going to be blessed with an extra chromosome. At 20 weeks, we went into Magee for our ultrasound and found out by the grace of God the cystic hygroma had completely disappeared and resolved.  We had our first miracle! We were so excited, but then in the next room we had our 20-week echocardiogram and we found out that Ethan only had half a heart. We didn’t know anything about hypoplastic right heart syndrome, tricuspid atresia and pulmonary stenosis. We went from amazing miraculous news to our baby now has a critical heart defect. Our doctor gave us the percentage of a 60% mortality that our baby wouldn’t survive the first surgery.

The day our baby was born, we were so excited to meet him! We found out he was a boy and he was absolutely gorgeous and pink. The doctors whisked him away to start the prostaglandin (a drug to help him survive once they cut the umbilical cord) but he actually didn’t need it. Due to a large hole in the upper chamber of his heart, the blood was able to get to his lungs despite the fact we were not expecting such news due to his HRHS.

At ten days, Ethan underwent a BT Shunt and a PA Banding, his first open heart surgery. Ethan came home 23 days later for the first time. He had a feeding tube, he ate, grew, and started all his services at home that are typical with children with Down syndrome and early intervention. At four months, Ethan went back for his second open heart surgery called the Glenn. We had a couple of setbacks, but he came home again. He continued his therapy and started talking, walking, and doing amazing things.

This past July, Ethan had his third open heart surgery called the Fontan. Typically, kids with Down syndrome are not able to have the Fontan, but Ethan has showed us that he is not your typical cookie-cutter kid. We have had dark days and didn’t know if he was going to make it. There was a time he was life-flighted and there was a time he was on a ventilator for days. We want to tell parents that your little ones who are blessed with extra chromosomes and/or broken hearts are stronger than the world can fathom and hold a light that is brighter than we can imagine. We are the lucky few who have these little ones to teach us how to love unconditionally. Ethan is “fearfully and wonderfully made” (Psalm 139:14) and sprinkles sunshine everywhere.

When you meet my son, you might think to yourself as you look at him, “Down syndrome…he has Down syndrome” but give it about 30 seconds for your eyes to adjust.

If you give him a chance, you will notice his glance. He will be looking at you whole-heartedly, warmly, and most likely will be smiling at you from ear to ear bearing all his teeth. You won’t notice that his eyes are slightly slanted and his right eye droops a little; you will see beyond that and look at the blue of his iris and the incredible length of his thick eyelashes. The glistening in his eyes will welcome you for who you are right that minute and the light will tell you that he accepts you wholeheartedly…. unconditionally.

He will reach out his arms to you in a loving manner. They will be so incredibility wide, strong, and as high as he can possibly get them. He wants to give you a hug or he will lean in with hopes you pick him up.

As your eyes adjust even more, you will see how his skin is so soft and his hands are so tiny. He might reach out to you and hope you will give him a “pound” or a “high-five”. He might giggle and laugh as you reciprocate.

His laugh will make you breath deep; deeper than you have ever breathed before. As your cheeks hurt from the smile you just caught, your heart will swell as you take an even deeper breath. You new perspective is just beginning.

You smile, you make eye contact; you are caught up in his play and his world.

You have just made a new friend; someone who loves you and welcomes you to his world as you are. You are enlightened by his innocence. He has just given you a gift. He hopes this gift will stay with you always.

The next time you see someone who looks like him, he hopes you take your perspective to a new level. He hopes you say “hello” to them, and not be so cautious as you were at Ethan’s introduction. Ethan wants you to smile from ear to ear, accept individuals with Down syndrome for all they are, and say hello. Look at them and see them.  Let your eyes adjust to see all the beautiful things they are and can be.

Ethan turned four this November, and he welcomes everybody in with a hug, a smile, a “hi”, a high five, a fist pound, and he continues to share his light wherever he goes.