This world lost a precious baby girl this week, Sydney Elizabeth Cook, 6 months old.
Sydney’s heart condition included the following anomalies: an enlarged right atrium, a large ASD (atrial septal defect), Scimitar Syndrome (right pulmonary veins feeding into the inferior vena cava instead of the left atrium,) an additional superior vena cava (SVC) feeding her right atrium, a narrowing of the aortic arch, and an open duct called PDA (patent ductus arteriosus). She also has an underdeveloped right lung. She was admitted to Children’s Hospital 2 days after birth and has been here since.
I don’t know this family personally but it hurts just as bad. My heart sank and my eyes welled up with tears. I cried for what felt like hours. My heart just hurts that another innocent child has lost the fight with congenital heart defects.
This is exactly why research and awareness are so critical. Please pray for this family as they trust God to move forward.
Lord, thank you for Trevor and for his strength I praise you for his life.
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I am so sorry to hear about this baby girl. She had identical symptoms to my son Noah. They removed his right lung at 6 weeks of age, repaired the PDA and an ASD and VSD all in one surgery. I am so sorry she was not able to survive this, our prayers go out to this family.
My heart aches, too, every time I read something like this. Six months old.
So young. So innocent. An angel.
We MUST step forward and do more research not only in how to help babies born with malformed hearts, but how to prevent it in the first place. One of the first things we were told after Alex’s diagnosis was “It’s not your fault. You didn’t do anything wrong. Alex’s heart defect is a fluke of nature.” I know those words were supposed to be comforting but they weren’t. I don’t believe Alex’s heart defects are a fluke of nature. I believe that with a lot more research, we can find out why children like Sydney Elizabeth Cook and my Alexander were born with certain life-threatening heart defects. We know the heart develops in the first trimester. That is where our research needs to be involved.
If only we could clone a heart. Doctors have been working to clone heart valves but the funding they needed hasn’t been there. I actually heard one of the researchers speak at a fundraiser years ago. His research group at Boston Children’s Hospital had worked to create a sheep’s heart valve and it had survived for 3 months! He predicted that human heart valves wouldn’t be far behind, but then the funding dried up. I haven’t heard any more about that project. If someone else has more information about Dr. Bayer’s research, I would love to read it!
If we could clone a human heart, then maybe we would understand why children are born with certain heart defects and then we could take measures to prevent these defects from occurring all together. Again, at Boston Children’s Hospital, there is work in this regard. Theorizing that hypoplastic left heart syndrome is caused in part from the lack of blood flow to certain parts of the heart due to narrowing of the heart valves (stenosis), doctors at Boston Children’s Hospital have created a procedure to open up those valves in utero! Naturally mother and child are at risk during this procedure, but it means that some babies can be born with less severe heart defects. Babies who might otherwise have not even been viable candidates for surgery, can have successful surgeries to lead productive lives.
Let’s get the word out so we don’t have to cry about another Sydney Elizabeth Cook. No parent should have to bury his or her six-month-old baby. Ever. Let’s not let Sydney’s, and the many other heart angels that have gone before her, life to have been lived in vain. Let’s use these heart angels to spur us to do more so they aren’t joined by more heart angels. I believe that if we raise awareness and work together, we can make heart defects a birth defect of the past.
Thank you for memorializing Sydney Elizabeth Cook. I never met her or her parents but she is now in my heart and they are all in my prayers.
Sincerely,
Anna Jaworski
mom to Joey (18; heart healthy) and Alex (15; HLHS)
author of “Hypoplastic Left Heart Syndrome: A Handbook for Parents” and “My Brother Needs an Operation” and editor of “The Heart of a Mother” and “The Heart of a Father”
http://www.babyheartspress.com
http://www.congenitalheartdefects.com
My son, Nathan, also has scimitar syndrome, so I followed Sydney’s story on her Caring Bridge site when I found out about her. I was blessed to share email communications with Sydney’s remarkable mother, Sylvie. I was impressed by her determination to put her own sad feelings aside in order to fill her daughter’s last days with love and happiness.
When you watch someone lose a child to a congenital heart defect, it truly makes you appreciative of what a privilege it is to still have your own child. My heart goes out to the Cook family.
Thank you for the comments, this is so tragic. We NEED to see some headway in CHD medicine.