Spotlight on a Superhero: Ruby’s Story (how we came to be the parents of a superhero)

 

“You never know how strong you are until being strong is the only choice you have.”

Our entry into parenthood was a rocky one. Although I doubt any new parent can say otherwise, we were given a particular challenge we had not expected. Excited about our growing bundle of joy, we waited in the doctor’s office with bated breath to learn the gender of our “bump.” Would our baby be floating on a sea of pink or swaddled in blues and browns? A few seconds after learning that a baby girl would be joining our family (my secret hope answered!), the doctor struck a serious tone and told us that something didn’t look quite right. Our baby girl had a Congenital Diaphragmatic Hernia.

Congenital Diaphragmatic Hernia (or “CDH” as it is more commonly known) is a severe and life threatening abnormality. It occurs when a baby’s diaphragm does not fully form, leaving a hole between the abdomen and chest cavity. This hole allows organs such as the liver, spleen, kidneys, and intestines to migrate up into the chest cavity, taking up space and preventing the lungs from developing properly. This condition does not present too many problems while the baby is in utero because the mother is providing oxygen via the placenta. After birth, however, babies born with CDH struggle to breathe and oxygenate their blood because their lungs are so small. Although the condition occurs in 1 in every 2500 babies, few people know about CDH and there is no known cause. The potential outcomes and survival rates for babies with CDH are sobering. While approximately 50% of babies with CDH survive, many of those experience lifelong struggles with breathing, growth, eating, hearing, and developmental delays.

After learning of our baby’s diagnosis we had some tough days. We decorated the nursery and prepared for our baby’s arrival. We were excited about becoming parents yet fearful we might not be bringing a baby home. We made the decision to move out to California temporarily so that the baby could receive the best possible care from CDH experts at UCSF.

Ruby Grace Ingram McVeigh arrived on June 2, 2010, and it didn’t take long for her to declare her hand. Despite the fact that her parents are mere humans, she was clearly part-superhero (DNA evidence still pending…). With friends, family, and neighbors cheering her on from all corners of the world, Ruby came through surgery, repeatedly impressed her doctors with her progress, and left the hospital after only 21 days. Her return to Atlanta was met with many happy tears.

Although Ruby’s story has a happy ending, many babies with CDH have a much tougher road. In an effort to give back, we created a cookbook to raise money for research on CDH’s causes and treatments. It is our effort, however small, to “pay it forward.” All of the proceeds raised from cookbook sales go towards research at UCSF to create better outcomes for babies with CDH. We have been deeply touched by all of the support we received in creating and distributing the cookbook in order to raise awareness about CDH.

Since her homecoming in June 2010, Ruby continues to heal and thrive. By all accounts she is a happy, healthy baby girl. Although we’ve had to be protective of her during this first year to avoid illness as her lungs grow, we are looking forward to introducing her to more people and activities soon. In the meantime, we are fully immersed in the chaos called “Parenthood,” and we are enjoying each and every smile and giggle.

I wouldn’t wish a diagnosis of CDH on any child or family, yet there are some ways in which Ruby’s diagnosis and the ensuing rollercoaster have changed our lives for the better:

  1. We have never felt more supported and loved by friends, family, neighbors, and strangers than we have during this past year. We had no idea we had such an amazing and strong support system until we truly needed it.
  2. We have a new appreciation of, and definition for “stress” which certainly helps put things in perspective. It takes a LOT more to tip the scale on the “bad day” meter now!
  3. We are stronger as a couple and as a family because of what we’ve overcome. We were put to the test as a team and we won! I came across a quote in recent months that was particularly meaningful: “You never know how strong you are until being strong is the only choice you have.” Hear hear. I’ll drink to that!
  4. Finally, we know how very lucky we are to have a happy, healthy baby at home.

Adrianne and Scott McVeigh have lived in Decatur for a few years and are proud to call the Parkwood neighborhood home.

Q&A with Adrianne:

How old is Ruby now? What personality traits do you see coming out in her?
Ruby just turned 8 months old, and she is the epitome of a happy baby. We’re biased of course, but we think of her as laid back, curious, determined, and CUTE! Her full-time job at the moment is learning how to crawl. We’d better start baby-proofing!

What activities are you and Scott looking forward to introducing her to this spring?
We are beyond excited for the protective ban on germy kiddos and busy places to be lifted! We plan on taking Ruby to all of our favorite breakfast spots, swimming and music classes, and lots of playdates!

Does she visit her UCSF team or is she able to receive all her healthcare here in Atlanta now?
Ruby has a great team of doctors her in Atlanta, but San Francisco and the doctors and nurses that cared for her while she “kicked CDH’s butt” hold a very special place in our hearts. We plan to return to UCSF for her 1 year check-up this spring. It is going to be wonderful to be there without worry weighing us down. We can’t wait to show Ruby the Golden Gate Bridge, wine country(!), and where she was born. We are even hoping to have a playdate with one of Ruby’s NICU neighbors (a fellow CDH superhero). It will be great to reflect on how far they have come.

Have you had time to try any recipes in Ruby’s Recipes?
I’ve been cooking and baking so much I feel like I’ve been channeling Amy Adams in “Julie and Julia!” The recipes are GREAT because they are a compilation of every family’s favorites. I am particularly enjoying the soups and cookies during the cold weather.

Are there any other ways that we can help children with CDH?
If cooking isn’t your thing, simply raising awareness about CDH is helpful and appreciated. If you are interested in supporting CDH research to create better outcomes for babies with CDH, you can go to: https://makeagift.ucsf.edu/children. Click on “Other” and enter “CDH Research.” To request a copy of Ruby’s Recipes ($10 each), please send an email to: CDHcookbook@gmail.com.

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One response to “Spotlight on a Superhero: Ruby’s Story (how we came to be the parents of a superhero)

  1. Great Spotlight! Glad to hear Ruby is doing so well.

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