Friday, June 23, 2017

Special Needs Spotlight || Noah

Hi, I’m Cecile and I suppose our story begins with my high school sweetheart, Keith, who I went on to marry a year after college. After we began our careers we ran what we thought was your typical course of living: get married, travel, buy our first home, and start a family. But as I was pregnant with our first born, Noah Bella, we discovered our lives from that point on would be anything but typical. She was born with Heterotaxy Syndrome and complex congenital heart disease. Despite it all, we were blessed with the most beautiful child we’d ever seen. The joy she gave us in watching her grow into a playful, inquisitive, and loving human being was truly a gift. Our lives changed as Noah passed away soon after her 13thbirthday due to complications in recovery from a procedure. Her 13 years with us were the most fulfilling years of our lives, which also included the welcoming of her baby brother into this world. Noah went to heaven on January 3, 2017 just two months prior to Henry’s arrival.

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Miggy: Cecile thank you so much for being here today and for sharing your sweet Noah and for raising awareness for congenital heart disease. Noah passed away recently due to complications from a procedure. I am so sorry, and I cannot imagine the depth of your loss. I hope that by sharing her story and spreading more awareness today we can continue to honor your beautiful and brave Noah who was such a light to so many. Let's start at the beginning, Noah was born with a congenital heart defect. When did you first find out and do you remember how you felt? Did those feelings change over time--if so, how?


Cecile: We were very fortunate to find out at 20 weeks gestation. A previous ultrasound had indicated a possible malformation of her skull so we were referred to a perinatologist to rule it out. I’ll always remember this doctor giving us the news, seemingly all in one breath. “Congratulations, you’re going to have a baby girl… her cranium measures normal, …but there seems to be another problem.” Our mothers, who had accompanied us to this appointment, were immediately asked to step out of the room so our doctor could give us the details in private. The 15-minute appointment soon turned into an arduous three-hour long sonogram where he discovered that all of our daughter’s organs were in reverse with the biggest complication being her heart. I’ve never felt so much fear consume me. I immediately fell into guilt, anguish, and overall fear for her survival. It was a very lonely place to be. Keith and I didn’t know anything about CHD nor did we know anyone with this lifelong condition. But with a lot of education from our doctors, and the support given to us by our family and friends, we were able to cope and learn to live with the disease as unforgiving as it is. Giving Noah the best life possible was our goal from day one.


Miggy: I know that all medical conditions vary from person to person, can you tell us about Noah's specific condition and how it affected her and your family over the years?

Cecile: Noah was born with Heterotaxy Syndrome with Dextrocardia and complex single ventricle heart disease. Heterotaxy Syndrome is a very rare birth defect, affecting 4 in every 1 million babies born. It involves the heart and other organs in the body to be arranged in abnormal places in the chest and abdomen. In Noah’s case, she was born with her heart on the right side (Dextrocardia), without a spleen, a midline liver and with two right lobe lungs. Her other organs were an exact mirror of a normal anatomy and functioned properly. Her heart carried the primary complication of having a single ventricle stemmed from the defect DORV or Double Outlet Right Ventricle where the pulmonary artery and the aorta—the heart’s two major arteries—both connect to the right ventricle, thus carrying poor oxygenated blood (blue blood) back to the body. With this defect, there is no wall that separates the two ventricles, so rich oxygenated blood (red blood) mixes with the blue blood and a lower oxygen saturation in the body is the result. She underwent four open heart surgeries by the age of five and several cath procedures throughout her life.

To properly take care of Noah, I left my full-time job as a graphic designer and worked part-time from home. Every surgery and cardiac procedure was life threatening and did not “fix” her. Surgical complications and sensitivity to anesthesia made her recoveries difficult, but we were able to overcome those obstacles. We were very fortunate for Noah to experience a fairly normal childhood, attending public school and participating in activities all while considering her physical limitations. She remained a constant source of positivity throughout and never let her heart condition take over. As we approached her tween years, she was faced with new complications that began to interfere with her ability to go into school so we pulled her out and enrolled her into a home school program. But she continued to keep a positive outlook on life and thrived academically. Despite the many ups and downs we always tried to keep focus on the present, knowing things could always be worse.
Miggy: Now that your daughter has passed away, what is the best way people can approach you and your family about this? Is there something you wish other people knew so as to be more sensitive/helpful as you and your family grieve the loss of your daughter?

Cecile: Losing your child is a forever life altering experience and a rare one at that. It’s important for everyone to know there is no timeline in the grieving process nor is there a proper order of emotions to be felt. In the nearly six months since Noah’s passing, devastation and sadness is still felt with the peace and acceptance of losing her. We have discovered our emotions can be all over the map, several emotions sometimes felt simultaneously. But we encourage everyone to not be afraid to ask how we are doing or be afraid to talk about Noah. We talk about her (and to her) everyday.


Miggy: Will you tell us about Noah? A special story, a personality trait or anything else you want others to know about Noah?

Cecile: Noah was quite special. To anyone who knew her or met her once, she had an undeniable magnetism that pulled you in, almost instantly changing your life for the better. She was a gift to so many. Perhaps it was her Indiana Jones hat that was signature to her unique style, her cool fashion sense, or seeing her tote one of her adventurous books she was reading that got people intrigued about her upon first look. Reading was her greatest past time. In any case, she inspired you. Noah was and is a life changer. Someone I feel was sent here for a particular purpose, a profound one to teach us all life lessons. For as long as I could remember, Noah was someone who always sought to help others, her friends, family, a lost dog in the neighborhood, the homeless, her CHD community. Helping others was intrinsic to living a happy life. She lived the Girl Scout Law before becoming a Girl Scout. And I don’t know if she realized this but she dedicated her life to selfless service, helping others without ever having the expectation of receiving anything in return. Whether it was love, simple kindness, or her time and attention, she felt everyone deserved it and it’s this pure heart that inspires all of us and allows us to always remember her. Noah was a big advocate for the CHD community. You can learn more about her support for families affected CHD by going to www.noahsfestivaloflife.com.

Miggy: If you could say something to the mom who just starting on this journey of being a heart mom, what would you say? Is there anything you'd say to yourself if you could go back in time?

Cecile: Be as brave and resilient as you possibly can be for your child. You are instrumental in teaching them, that despite their broken heart, they can still enjoy and love what the world has to offer and they can feel empowered to make a difference in this world. Also, you must be their number one advocate for receiving the best care possible. Don’t be afraid to ask lots of questions, push to get what you need for your child, and always remember you’re not alone. There are great organizations out there that can connect you to other heart families.


Miggy: Cecile, as you share Noah's story what do you hope people will take away from it? Is there one over-arching message or lesson you learned from being Noah's mom?

Cecile: I hope when people learn about Noah’s story, they stop and reflect upon themselves. Are they living a purposeful life? In the face of Noah’s lifelong hardships of hospital stays, around the clock meds, physical and lifestyle limitations, she remained vigilant to live a purposeful life; to remain curious about the world around her and how she could contribute to make it better. I followed her lead and took notice of her cues to consistently live in the present and take the time for one another. In this fast, digital age, I know I’m not the first to say that we can all forget how quickly our time can flee with our loved ones. Don't wait until work gets less busy, until school gets out for summer break. Make time for the people you love and be kind to those around you. That’s how Noah lived, that is her message.

Miggy: Lastly, I just wanted to ask if there's anything else you'd like to share with us--about congenital heart disease, your daughter Noah, your family, death or love?

Cecile: As a family, we took the greatest pleasures in the simplest things and enjoyed each other slowly. Game night was something we did more than once a week. Cooking together was a daily occurrence. Forgoing the chores to make more time for family and friends or forgetting about how late it was to allow her to read for as long as she wanted happened frequently. Some of our most treasured memories lie in these moments. But the greatest joy we received from Noah was to witness the excitement and anticipation of becoming a big sister; something my husband and I will never forget. Losing her just before the arrival of her baby brother was a devastating experience all on its own, and it will take time before we feel the peace in that. But he will no doubt feel the immense love she brought to our family and experience her through us.

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Cecile, that was beautiful. Thank you so much for sharing your beloved Noah with us and all the wonderful things she taught you. I absolutely loved your last answer and felt the love in your family as I read these words: "As a family, we took the greatest pleasures in the simplest things and enjoyed each other slowly. Game night was something we did more than once a week. Cooking together was a daily occurrence. Forgoing the chores to make more time for family and friends or forgetting about how late it was to allow her to read for as long as she wanted happened frequently." That phrase "we enjoyed each other slowly" is really resonating with me and something I want to do more. That is a beautiful way to live.  I can't believe she was only 13--her top photo leaves me breathless and gives me the sense that Noah was wise beyond her years. I have no doubt that her impact of her life will continue to ripple through your life and the lives of others for many years to come. So much love for your and your family and again thank you for letting me share your story. It was an honor. 

If you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. I'm always looking for more wonderful families and individuals to feature. 

Have a fantastic weekend!
XO, 
Miggy

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