Tag Archives: pulmonary atresia

Presenting our 25th warrior, Christy!

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“I am not my defect”                                                      Steve Rosenfield “What I Be” project

“I was born with Tetralogy of Fallot with Pulmonary Atresia in 1980. My parents did not know of CHD before birth.

After I was born my parents were told to take me home and keep me comfortable until I die. Instead, they signed up for the clinical trial of Prostoglandin E to keep my ductus open long enough for surgery. I had my BT Shunt after birth by a general surgeon at UCSD.”

Christy has had MORE heart surgeries that she had successfully endured…earning several warrior badges…

-“Waterston shunt by the same general surgeon at UCSD – Waterston shunts are not performed anymore because they killed 99% of the children who received them from pulmonary hypertension.

Rastelli procedure in 1985 by Dr. Hillel Laks at UCLA

-Pulmonary Valve Replacement and Aneurysm repair in 1998 by Dr. Hanley at UCSF”

Christy has accomplished so much in her life already…

– “Graduated College with a Bachelors of Science in Health Education in 2003

– Graduated with a second Bachelors in Nursing in 2007

– Graduated with my Masters in Nursing in 2010

– Now works as a Pediatric ICU nurse for Kaiser Roseville.

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Married in 2006 to Steve Sillman : )

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Delivered a beautiful baby boy named Noah in January of 2010.

– I’ve been writing columns and blogs for both http://www.ipinionsyndicate.com and for ACHA at http://www.achaheart.org for several years.”

Complications and CHD specific issues…

– “Near death experience with my 1985 surgery. Tunnel, white light, message from God – the real deal.

– Generalized anxiety disorder

– Reading difficulties – I’m a horrible speller too.

– Postpartum cardiomyopathy (I’m still dealing with this)

– Lost to ALL cardiology care for 8 years (yes, you read that right!)

– Received unspecialized cardiology care from a local cardiologist with “an interest in CHD” for 4 years.”

What having CHD means to me…

“Everyone has SOMETHING, whether its depression, obesity, a chronic illness, or body image issues – we all have something we “deal” with. Having CHD I have had my “something” my entire life, and I see that as a benefit. There was no shock to my psyche, it is what it has always been – the thing that makes me, well, ME! The CHD journey is full of ups and downs – periods of normalcy followed by total life upheaval. I have been blessed to have been raised in a supportive family and to meet my devoted husband at a young age.

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I have always loved children and knew I wanted to be a mother, but I knew it was going to be a huge challenge. Pregnancy with CHD was a harrowing journey but one that was ultimately worth it all. My son Noah is a miracle.

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He’s now 3 and the light of my life.

I wasn’t supposed to live, but live and give life I did. The stakes somehow seem higher than ever before for me now that I’m a mother. I don’t merely WANT to live, I NEED to live.

Finding the CHD community has been life changing. I’ve met many other adults with CHD who inspire me daily, families who continue to support their children through the CHD journey, and grieving mothers who re-define unconditional love and devotion. I was so lonely and lost for so long, I found my way back to appropriate care and the supportive arms of the CHD community.

My goal is to advocate, support, and cheer-lead the CHD community as we fight for research, services, and a voice! I hope to inspire, engage, and catapult our collective story.

Each of us has a story, but collectively we have an epic tale of strength, courage, and, most of all, HEART.

Thank you Dawn for letting me in on your inspiring project! You’re an awesome voice in the CHD community.”

I remember “friending” Christy through Facebook a little while ago. I had no idea that she was an adult CHD warrior right at first. When she gave me that first  brief glimpse of her story, I was stunned. I kept thinking..”..she has a CHD AND is a nurse? in a pediatric ICU? AND IS A MOM? what?” Stunned I tell you. I’m pretty sure I’m still stunned. And I love it. I don’t really know many people who live without a heart defect can even handle accomplishing these things separately, let alone, all at once. That pediatric ICU is very lucky to have you and so is that cutiepie of yours. Christy even diagnosed one of my husband’s ailments a few days before our doctor did- an ailment that wouldn’t have been properly diagnosed unless I hadn’t asked about HER suggestion! Stunned again! Thank you for letting me share your story and thank you for being so awesome. Christy, you are SO welcome!

Presenting our 19th warrior, Gabby!

I don’t know what I love more about this family.. The fact that we live in the same state or that we have SO much in common with our stories! Looking at Gabby’s photos, you can’t NOT smile. She is one adorable kiddo, who’s going to go places. Actually, I could make a really long list of reasons why this family rocks, but instead I ask you to read Gabby’s story. Her mama does an amazing job:

“My pregnancy was a healthy and long one (2 weeks overdue), so I had to be induced. Gabriella Gross entered this world on October 27, 2011, and was quickly labeled a beautiful healthy baby girl. About 3 hours after birth, we began missing the first signs of CHD. Gabby didn’t want to wake up for like 5-6 hours. All the nurses were freaking out and telling me to wake her up and feed her. I kept trying to wake her up. She didn’t want to wake up. I didn’t really know any better so I actually wasn’t nervous and eventually she woke up.

At home Gabby and I began the process of sleep deprivation and breastfeeding, but again I missed the same sign that my little one was basically sleeping through the night on the first week. I joined a local lactation group where I could weigh and feed her, and I quickly noticed Gabby never ate over 1.5 ounces at any feeding. Plus, she would fall dead asleep after eating. I also started noticing her weight was dropping off. But I had two pediatricians and two lactation consultants telling me this baby is healthy, “look at those cheeks”, “this baby is getting everything she needs”, and “your milk supply is fine”. Ironically, I was even given a therapist card and I was told maybe it was postpartum blues.

Gabby started getting older and more awake, and then she wanted to eat, what felt like, every 45 minutes. I decided I didn’t have enough milk so I switched to the bottle when she was about 2.5 months. I remember my girlfriend feeding Gabby the bottle and saying “I know why you didn’t breastfeed, this girl won’t even finish a bottle without stopping and pausing numerous times.” Even after a month of bottle feeding, Gabby wasn’t gaining much weight. She had fallen from 50% to 15% in weight. Still, the pediatrician said this is such a healthy baby, and being a new mom I went home. Another month passed and I was visiting a friend in St. Louis when we weighed Gabby on the baby scale at a children’s museum. This time, she hadn’t put on any weight. But I thought the scale must be wrong.

Fast-forward, and Gabby is now 4.5 months old. It was time for her 4 month check up. I had a list of questions I wanted to ask the pediatrician that morning (1) Do you know why Gabby would turn purple when we go up to the mountains? (2) Do you hear Gabby’s grunting when she tries to do tummy time……like she’s working so hard? (3) What do you think of Gabby’s weight and feeding? Well, I never got to ask my list of questions (which ironically were due to her heart problem), because Gabby had cold symptoms during RSV season. Because of the wheezing the doctor pulled out the pulse ox machine. After 10 minutes later we are off to the hospital in an ambulance (her pulse ox was bouncing between 60 and 80). RSV and other tests were negative, so eventually an echo was ordered for the following morning.

March 15, 2012 is a day I will never forget. The echo technician arrived at 7AM (before Joe even got back to the hospital). She told me, the doctor will review the results today and call you this afternoon. The echo begins, and I could tell the technician was getting frustrated with Gabby’s lack of cooperation. So she said, “I’m going to go find her a pacifier” (even though I told her Gabby doesn’t like pacifiers – probably another sign we missed). The technician came back and started up the echo again, and after a couple of minutes she says, “oh the doctor is going to stop by on his way in to work”. THUMP THUMP THUMP went my heart and I just felt like puking and crying. I knew something was really wrong when the doctor was going to stop in on his way to work.

The next words I heard that day many CHD families understand…. being told the diagnosis that your child has a severe congenital heart defect that would require a lifetime of surgeries.  Gabby has been diagnosed with Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. MAPCAs stands for Major Aortopulmonary Collateral Arteries which is actually rare; about only 300-500 kids a year are born with it. You know it’s rare when we were interviewing doctors and they wanted to do an echo for free, just because they wanted to see the MAPCAs again.

GABBY LIVED FOUR MONTHS WITHOUT A PULMONARY ARTERY.

Gabby’s MAPCAs were so large, they were adequately compensating although she was obviously starting to struggle more.

Gabby wasn’t diagnosed during ultrasounds, and no one heard the murmur or checked a pulse ox before leaving the hospital (the pulse ox would have caught it).  Sometimes I am sad when I look back on so many of the missed signs. That if I had been educated and I had known the signs 1) she slept and slept and slept the first 3-4 days (and later at 3 months old she would fall asleep while playing) (2) feeding wasn’t going well (3) we took her to the mountains twice and she would  turn blue (4) she was grunting or heavy breathing when she tried to roll over or do much activity (5) and she was even retracting when she was breathing (6) she did have rapid breathing rates which I know can’t help but see on old videos. But I cannot be sad or resentful for things that I cannot change. I only hope that I can help change the world that so many families live in. I hope to help change the world of CHD for the better. I hope to be a resource to new families with CHD, and I hope to raise funds for research for CHD, and hopefully I will continue to educate as many pregnant family and friends as I can on the signs.

Gabby had her first heart surgery (all defects corrected)…

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Gabby, post-op..

and she is doing great. She will need many more surgeries to replace her pulmonary artery as she grows, and her MAPCA’s have a high risk of getting smaller rather than getting bigger. But Gabby is doing great right now!!

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She walked at 11 months (even after an open heart surgery at 7 months). She is a thrill seeker at 15 months (loves swings and climbing and riding any moving car or horse). She is so interactive with us and is trying so hard to start talking. I can’t imagine life without her, and I’m so glad she was born in 2011 and not 1951. I pray daily for our family, families like us, pulse ox legislation and stem-cell research.”

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Right on! ; )

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Gabby enjoying a hike with her family. : )