Tag Archives: death

CHD Week: Cora’s Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!



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2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya


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The past few days have been pretty rough; I’ve had 3 people I was close to pass away suddenly, 2 of who had Marfan. Having a chronic, potentially life-threatening genetic disorder taught me the harsh realities of death early on in life. I’ve put myself in a line of work where I’m more apt to experience loss, just because I’ve come to know and love many more “Marfs” than the average one of us, but death isn’t something I’ll ever get used to.

On March 6th I got word that one of the teens I worked with at conference, Erin, had died. I had spent a fair amount of time with her that long weekend and come to appreciate her tell-it-like-it-is demeanor and sense of humor. She had a maturity beyond that of even many of the older teens and understood her physical limitations but didn’t let them define her. I volunteered to write the obituary email to the other kids to let them know of her passing, and it was one of the hardest things I’ve had to do in awhile. It just doesn’t seem fair that kids should have to die.

Last night I came home from a fun day at the aquarium with mom, Menininho, my friend Kathleen and her boyfriend Mike, to an email letting me know that my friend Brandon had died. I met Brandon in the network group for people with Marfan that I ran back in Columbus. He wasn’t much older than me and his wife was pregnant at the same time I was. They welcomed a son just before Thanksgiving, then Brandon had heart surgery 2 weeks later. Everything seemed to be going well, but he developed complications and passed away a few days ago. I still can’t believe that he’s gone, when he seemed so healthy. I still have the emails and pictures he sent after his son was born and post-surgery. It breaks my heart to know his little boy will have to grow up without his daddy.

Then, this morning I received a message from my brother Matt that our family’s friend, Jack, died in his sleep last night. We’ve known Jack and his family since my brother was in 1st grade. Matt dated Jack’s eldest daughter for a while before he left on his mission. Jack was a pillar in our community and very good to Matt, even after he and Kate broke up.

So, as you might imagine, I’ve been thinking a lot about the fragility of life. After read the email about Brandon’s death and began to cry, my mother gently suggested, “Perhaps it’s time for you to get a new line of work.” I suppose I disagree. While losing friends is at time impossibly hard, I’m better for having known each one of them and I wouldn’t trade the good memories for a lack of pain.

I am also really grateful that I know families can be eternal. We all come to this earth with missions to fulfill, and our lives don’t end when we die. I know I will see Erin, Brandon, and Jack again someday, just as I’ll get to see my Grampa and my dad. It’s that knowledge that brings me comfort in these times of pain.


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My Grampa Brown died today, after a very long and brave battle with cancer. I have a lot to write about him but tonight I am just going to post some pictures. When his cancer first came back and didn’t look so good, Mark surprised me with a Christmas present of 2 tickets to Utah so we could visit my grandparents. It was the most thoughtful Christmas present I’ve ever been given. We didn’t think Grampa would make it for a few more months but both Mark and I got one more trip up there to visit: Mark in July of this year and I an August. Anyway, the pictures are from that Jan. 2007 trip with Mark.

My Grandparents and me with my dad’s best friend (Paul), his wife CC, and their daughter Corban

I miss him very much. We were close, especially after my dad died. His funeral will occur as I’m having my c-section.

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