Sometimes when you hear the word “awareness”, I’m not sure many of us know what that can mean. You might hear the term and think “Yes, I know what a congenital heart defect is. I’m aware…so now what? How does being aware change anything? Babies will still be born with it. I feel badly that babies have to go through things like this, but being aware doesn’t change that they will still be born with problems.”Have those thoughts crossed your mind? I had a baby with a heart defect and have had those thoughts myself, even after she was born! Well guess what? If you are one that has similar thoughts, please read this! Because being aware of anything can spur you into motion IF you know what to do! I’m going to do my best to cover that in this post.FIRST, let’s start with some facts:
Those are all good things to know—but I’d like to point out that last one especially. In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research. Isn’t that just wonderful news?! And what would be even better is if the cause of these could be determined and maybe some even prevented.
I have poured through medical journals on the CHD Ruby has, Tetralogy of Fallot. I have read tragic stories. But the surgery for Tetralogy of Fallot has come leaps and bounds over the years, thanks to research and brilliant doctors and nurses and cardiologists. I am thrilled with Ruby’s outlook. However, even with her positive outlook, Ruby is still at risk for developing complications as an adult. Even without having valve repair done at all, research shows that “Some long-term problems can include leftover or worsening obstruction between the right pumping chamber and the lung arteries. Children with repaired Tetralogy of Fallot have a higher risk of heart rhythm disturbances called arrhythmias. Sometimes these may cause dizziness or fainting. Generally, the long-term outlook is good, but some children may need medicines, heart catheterization or even more surgery.” (source: American Heart Association) So of course continuing research would be beneficial for anyone with a heart defect.
I also have found many new friends along our journey—my heart family. Some of my friends have babies that are doing well, others are struggling with lengthened hospital stays and health issues. And some of my friends have lost their babies. I have not thought of death so much as I have the last 8 months. Probably not so much in my entire life combined before this time. I have cried tears of joy for these families and tears of sorrow. It is sobering and very saddening at times. I celebrate the successful stories, and mourn the tragic losses. Through seeing some of these families lose their sweet little angels, I have witnessed incredible strength and power. These people are amazing. These people are my heroes. These people are trying to spread love and awareness and help other people who are going through similar things with their babies, all to honor their sweet souls that they long to hold in their arms once more.
Here is where you come in.
Let’s chat about what you can do!
1) Tell everyone you know who is pregnant to request a pulse-oximeter screening test for their newborn! This isn’t 100% fool-proof, and there are heart defects that go undiagnosed and the babies go home without anyone knowing. This can be alarming once home, especially if the baby isn’t getting enough oxygen and starts to turn blue, and can potentially end very tragically (which is does sometimes, sadly). It is a law in Utah now, but not everywhere. This is not how Ruby was diagnosed however. Since her oxygen was good, we only found out because of her loud heart murmur and an echocardiogram as a result of the murmur. But the pulse-oximeter screening test CAN and DOES save lives. And it’s so simple. HERE’s a video on it.
2) Donate blood. I’ve had two of my babies need blood transfusions and feel strongly about giving blood now. I’m so very thankful for those who have given blood so my babies could live!
3) Educate yourself on being an organ donor. There are babies and children waiting for hearts—how hard for the families of those babies to be in the position they are. To be waiting for the gift of a heart knowing it will mean someone else’s sorrow. Just something to be aware of and think about, because it can greatly bless another family.
4) Donate your time, supplies, money, etc. to those helping raise awareness or help families with a CHD child. Here are three that I’d love for you to consider:
Teisha Walker lost her sweet baby Tyton recently at only 6 months old. He went through 8 open heart surgeries in his short life. Makes my heart so sad for her family. They are wanting to help families staying in the Cardiac ICU at Primary Children’s Hospital in Utah, and are putting together survival kits for the parents there. I know how much we appreciated the gifts we received while there! It just brightens your day. They’ve named it “Team Tyton Helping Hearts Foundation”. PLEASE go check it out and consider donating, whether it be supplies for the kits or money to help. Every single bit helps and I am sure it can help aid in healing during such a trial. You can read their touching story by clicking through those links.
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Tammy Bowers has created a wonderful app that helps keep track of everything a parent would need if you have any family member with medical needs. She is trying to get funding and is about halfway there to make this app a reality—and she only has 17 days left to get the funding! Again, this is another thing that every little bit will help. Click HERE to read more about it and help make this a reality! I know so many people this would help!
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I’m a huge fan of the Intermountain Healing Hearts group for the Intermountain region. HERE is their donate page. They are wonderful and do so much good. And for those of you who have a CHD or have children with a CHD, and you are in the Intermountain area, please look them up! it has been a HUGE blessing to me through Ruby’s journey. They also do a 5K walk every year!
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And of course there are many other places that would love your help. But those three listed above have special meaning to me because they have been a big part of our journey.
Thank you for supporting something so close to my heart! I am so thankful for the help given to my family during our time of need and can’t wait to return the favor to others—even just little things have a huge impact!
If you have other ideas on how to spread awareness, please let me know and I can add it to the list!
A friend (who reads your blog) led me to your page this morning, and I am glad she did. I’m a fellow blogger and my husband and I are LDS living in Calgary, Alberta. I’m currently pregnant (almost 29 weeks) with a little girl. However, during our detailed 20 weeks ultrasound they found a congenital heart defect called Pulmonary Atresia with VSD (which is frequently considered the most severe end of the spectrum of TOF, though many believe it should be treated as two separate entities).
Our heart journey is just beginning, but meeting other heart moms or reading other peoples stories have helped give me some strength and courage through this trial. I just hold on to the fact that there is a reason Heavenly Father is placing this little angel into our arms.
Much love, Kierra
I was wondering if they do the testing to newborns—I’m glad to know they do in utah. Thanks for such an informative post! I enjoyed learning. What a great idea to have an app to help families with extra medical needs going on!
What a wonderful, positive and helpful post! I’m 24 weeks pregnant, no sign of problems, but this sparked a very important and productive talk between me and my husband last night. Thanks for posting this, and I’m so glad to see your little Ruby looking so spunky and happy!