By being part of the Baby’s First Test Consumer Task force, I have had the opportunity to meet some amazing people and parents this past year. This next story comes through one of those connections and meetings. Though, I have never gotten to meet in person (yet) the mom whose story is told below, I am thankful for being able to share her story and the knowledge that I have gained about heart defects and why every child should be screened for pulse ox at birth. Here is Heather’s story about her son Felix. A big thank you to Ruth Caruthers for introducing me to Heather and for all the advocacy Ruth has done to pass legislation in her state of West Virginia so all babies are screened at birth with Pulse Ox.
Here is Hether’s story about her son Felix-
- Tell us about your journey with CHD /pulse ox
Here’s the story, as posted on FightingFelix.Tumblr.com
Felix was born October 10, 2011. It was an easy, uncomplicated, healthy pregnancy and a simple and quick delivery. I got the initial skin on skin contact with him and they took him to clean him off. They did a quick heart check with a stethoscope and noticed a loud murmur. Heart murmurs are fairly common so they were not worried (so neither were we). They gave him back to me for cuddles, the first feed, and of course the mom and dad with newborn pictures.
He is such a beautiful baby! We were so excited.
Once we were done, they took him to give him his first bath. While Felix was in the transition nursery, the nurse noticed he was a little blue (not noticeable to us laypeople and just a little beyond the point that she was comfortable with). They hooked him up to a pulse oximetry machine and noticed his oxygen levels were in the 80’s (instead of the normal 99 or 100%). At that point they put him on pure oxygen to see if that would help the issue. Once it did not, he was then rushed up to the NICU and received an ECHO. A little while later after the cardiologist had a chance to review the ECHO, he was diagnosed with Truncus Arteriosus, a very rare heart defect (the ECHO tech thought it looked like Tetralogy of Fallot, another CHD but not quite as serious).
To survive, Felix needed surgery. At four days old they performed open heart surgery to fix his heart.
- What did you know about CHD/pulseox before your child was diagnosed?
I knew about Congenital Heart Defects (CHD) but had no idea about pulse ox testing. What I didn’t know is that 1/100 babies have some form of CHD so it’s more common than I realized.
- What is the MOST IMPORTANT THING you want to tell others about CHD pulse ox?
CHD can come out of left field. Neither myself nor my husband have CHD. Felix’s condition is very rare and adults with it are pioneers. The pulse ox testing is not a standard test nurses use in Texas or many other states. It’s low cost, non-invasive and only takes a few minutes. It’s usually done after 24 hours of life so it doesn’t really interfere with bonding time. Please ask your nurses about it when your baby is born.
- If you had a million dollars…..
Oh, I’m not that exciting. Pay off debt, put some aside for the kid’s college and retirement, take some fun vacations, donate more…
A few other people affected by CHD and I are starting the Texas Chapter of The Children’s Heart Foundation. The money raised will go toward research of congenital heart defects. I would love for someone to find a better treatment option or even what causes this.
- What is your biggest daily challenge?
Right now it’s balancing two kids. Overall, my daily life is pretty normal. It was a bumpy road to get here, but now we just have a few extra doctors’ appointments, blood draws, and Felix is on an antibiotic. None of that is every day though and we feel very lucky about that.
- What do you know now that you wish you knew THEN?
I go back and forth. I wish I would have known to take another look at the heart at my 20 week ultrasound or even one after that. If we would have known ahead of time, we would have been better prepared. Those first few days were such a fog. I was in such shock I couldn’t make any decisions. I left most of the choices up to my super husband and the medical team helping us out. However, if we would have known I think I would have been too anxious and depressed to keep up with my one year old while pregnant.
- How has this experience changed you and your family for better and for worse?
I think adding a family member always changes the dynamics of the family. However, I feel like we’ve come out of this with a bigger support network than ever. This experience was so overwhelming that we couldn’t have handled this alone. It made me ask for help and take help in ways I never would have before. So many people helped us out. It’s been humbling and life changing for me. We are so lucky.
- Tell us a little bit more about the heart condition that affected your family? What is it? symptoms? treatment?
Truncus Arteriosus is a condition where the heart has a hole between the two lower ventricles and instead of two arteries that pump blood to the body (one to the lungs and one to the rest of the body), there is only one “trunk.” They don’t know what causes the heart to grow this way and it requires surgery to fix it. Although every case is different, most babies have a better chance of survival if the first surgery is done within the first month. There is a lifetime of monitoring to be sure everything is working correctly. There will be future surgeries in Felix’s lifetime to replace and repair parts of his heart. During his surgery his thymus was removed. This is common in heart surgeries since it is not a vital organ and it blocks surgical access to the heart. The thymus regulates cells that fight off disease. Most people have thymatic tissue elsewhere to make up for the loss of the thymus but Felix still has immunity issues. We’re monitoring those as well.
Signs of heart failure in babies include sweating while eating, trouble eating or breathing, excessive sweating, and sleeping more than normal. Many of those symptoms are easily overlooked until there’s major damage to the heart or lungs. Sometimes a baby will have a blue tint, blue lips, nail beds, or lips. The pulse ox is a much easier and less scary way to find a CHD.
- Anything else you would like to share? Advice? Words of wisdom? Quote?
Get a good pediatrician. I can’t tell you how valuable our relationship is. Our pediatrician has gone to bat for us several times and helped me navigate through some pretty treacherous stuff. She was awesome with our first kid and she has become the central person I run all Felix’s treatments through.
Editor’s note- In Texas there is a group trying to get interest to pass legislation for pulse ox to be done on every newborn in the state at birth- you can find the group HERE on facebook.