A Child Born with Down Syndrome: One Mom’s Path From Grief to Gratitude

In honor of World Down Syndrome Day, Melanie Harrington shares excerpts from her blog, Our Journey Through Life – a rich chronicle of a baby’s fighting spirit and a mother’s courage to walk “the road less traveled” and arrive a better person.

May 2012: Our world changes forever
We get the call we’ve been dreading:  the baby boy I’ve been carrying for 15 weeks has Down syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine or eat foods I’m not supposed to eat. Why me? Why us? I am mad, sad, anxious and confused. Will we be able to love this baby? What does his future hold? Bullying, dependence, frustration? And, what does my 2-year-old son Cody’s future hold? Constant defending? Jealousy?

I’m feeling very un-mommy-like thoughts that I never thought I could feel about my unborn baby. Can I handle this? Can my husband, Chuck? Will our marriage survive? Right now, I don’t know the answer to these questions.

My doctor refers us to a genetic counselor for more testing. I don’t really gel with the first counselor, so she refers me to Seattle Children’s Genetic Counseling Clinic. This counselor immediately puts me at ease and I like her honesty. I also see Dr. Margaret Adam, who is wonderful and gives me lots of helpful information. Dr. Adam reassures me that Down syndrome can affect any family – one out of every 800 babies born in the U.S. has the condition.

June 2012: Grief…then acceptance
I still feel out of control – so desperate to understand what is really happening. I go to sleep and wake up not remembering if the diagnosis is a dream or real, then I remember. We cry a lot and worry all the time. We grieve for the child we thought we were having and we don’t know if we can ever come to terms with the child we are having.

After three long, insufferably challenging weeks my eyes finally open when my obstetrician (of all people) quotes the bible during an appointment. Jeremiah 1:5, “Before I formed thee in the belly I knew thee …” All of a sudden, it all makes sense. We were chosen to be this child’s parents and we are capable of loving him unconditionally. I walk out of that appointment knowing everything will be OK.

A few days later we name our son Eli Michael. He is no longer just a scary diagnosis to us. He is ours and we accept and embrace him. We spend the following weekend on the Washington coast. I take a picture of Cody playing on the beach and when I look at the image on my camera, I can’t explain what I see: instead of one shadow standing with Cody, there are two.

July 2012: The kindness of a new community and the loss of old friends
The Down syndrome community has shown their kindness to us in more ways than I can count – and we’ve only been a part of this “club” for a couple of months. It’s a community that I didn’t think I wanted to be a part of, but we’ve met such gracious people already that I can only imagine the friends we’ll meet in the future.

Sadly, several of our old friends have dropped off the radar after we told them the child we are expecting has Down syndrome. My son may have one extra chromosome, but that does not make him a monster. His diagnosis is just a part of him, not all of him. Eli is my baby and I am so proud that his kicks and heartbeat are strong. I have a feeling this is only the beginning of the things he will do to make me proud.

August 2012: Our first procedure at Seattle Children’s Hospital
Almost half of all babies born with Down syndrome will have a congenital heart defect. We see the very amazing Dr. Meg Vernon through Seattle Children’s Fetal Care and Treatment Center and learn that Eli has a ventricular septal defect (VSD) – a hole in the wall that separates the two lower chambers of his heart. These are the chambers that push oxygenated blood to the body. Dr. Vernon says the hole may fill in on its own or he may need surgery – we won’t know until after Eli is born in October. What we do know is that the echo taken at Overlake Medical Center (where I’m scheduled to have a C-section) will be interpreted by a cardiologist at Seattle Children’s Heart Center on the very day he’s born. I feel so much safer knowing Seattle Children’s cardiologists are on our team.

October 2012: Eli greets the world
The day before Eli is born, I write both my boys a letter.

Eli is born on Oct. 25 at 10:05 a.m. He weighs a healthy 6 pounds, 12 ounces, but weak breathing puts him on Overlake’s neonatal intensive care unit for the first week of his life. We already know Eli is a fighter, but we’d hoped he wouldn’t have to go to battle so soon.

It’s interesting that Eli is born in October, which is Down syndrome Awareness Month. I heard it said best in a new friend’s blog I follow at Kelsi’s Corner: “Down syndrome does not define an individual any more than brown eyes define someone. It is a part of who that person is – but they are first and foremost a human being.”

November 2012: Scary news
Eli’s first appointment at Seattle Children’s Heart Center shows he has signs of heart failure – and he’s not even 2 week’s old. His heart is working a lot harder than it should be, especially when he eats. Dr. Vernon likens it to running a full sprint and trying to drink water at the same time. His VSD is also very large and will require open heart surgery. I am scared to death.

January 2013:  A day to celebrate
Today, Seattle Children’s called to schedule Eli’s heart surgery for this month. Getting that call made me physically sick and then I spent the next two hours completely terrified. My baby has to undergo a major surgery, a surgery that will stop his heart while a heart-lung machine performs the function of both for him. Although I knew this day was coming, it doesn’t lessen the worry. On one hand, I am relieved to finally get my sick boy healed. On the other hand, I am filled with dread.

The day of surgery is here and after less than two hours, the surgery is done and Eli is in recovery! As soon as I can hold him, the nurses give him to me. I am so thankful for the expertise and compassion of our surgeon, Dr. Michael McMullan, and the amazing nurses that work at Seattle Children’s. Their bedside manner is incredible and they include us in every step of the care plan. They call Eli their star patient.

We are home after just five days in the hospital and Eli is doing wonderfully. He has so much more energy now that he’s not expending it all trying to breathe. Every year, we plan to celebrate the day Eli entered this world, then three months later we’ll celebrate his “heart day” – the day he got to live in this world! No words can thank Seattle Children’s for their financial assistance program. Their generosity allows us to focus on our son’s health without worrying about the huge cost to restore it.

April 2013: An unexpected setback
On Easter Sunday, Eli had 50-plus little seizures/spasms within five minutes. It was terrifying. On Monday, we saw Seattle Children’s neurologist Dr. Sid Gospe and learned that an estimated 8 to 10 percent of babies born with Down syndrome end up with infantile spasms. I feel so helpless. I show Dr. Gospe a video of Eli’s seizures and you can hear me in the background of the video telling Eli it’ll be OK and that mama is going to fix this. What you can’t hear is the fear I felt. I was so afraid to lose my precious boy.

Being at Seattle Children’s for another scary diagnosis makes us sad, but we are very grateful to have such a compassionate and expert medical team that rallies around our boy and always takes this mom seriously! I’m so grateful that Seattle Children’s is in our area. What would we do without it?

May 2013: Gone for good
The good news is that we caught the seizures very early and aggressive therapy with ACTH – an injectable steroid– successfully stops them in their tracks. But for a very difficult six weeks we saw Eli’s beautiful smile fade. He didn’t laugh. He was lost in a steroid haze. Finally, he has a clear EEG and Dr. Gospe says his brain activity is normal and everything looks perfect. Unless the seizures return, we don’t have to visit the Neurology Clinic again. We pray the seizures are soon to be a distant memory.

June 2013: The terror returns
Last Friday, a CT scan at Seattle Children’s confirmed Eli has craniosynostosis – a condition where the bone plates of a baby’s skull fuse together too quickly, and don’t give the brain enough space to grow. Eli has a rare form of the condition, affecting only one in 300,000 babies. Now, add that to Down syndrome, VSD and infantile spasms, and our kiddo is one in a million. But, we already knew that! Eli will need another serious surgery to correct the condition. Lucky for us that the team at Seattle Children’s Craniofacial Center is considered the best in the nation, but I am still so afraid that something will go wrong.

October 2013:  A big exhale
Dr. Amy Lee and Dr. Craig Birgfeld, skilled and caring surgeons, fix Eli’s skull in a five-hour surgery. They treat Eli as if he was their own and that’s what makes great doctors. We cannot thank them enough. Seattle Children’s is the only place where Eli doesn’t have to wear his hat – even with zig-zag stitches on his head – no one stares. The people we pass in the hallways smile at my beautiful boy and Eli beams back.

Dec. 31, 2013: Glass half full
As I sit here reflecting on the past year, I’m thankful for so much, especially Eli’s health. Nearly 14 months ago, we thought Down syndrome would take away our happy life. Truth be told, it was just the beginning of living life. It took Eli to help us appreciate all that life offers – and it took Seattle Children’s to give our son the gift of a healthy life!  Nothing can stop us now. 2014: Bring. It. On.

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