If you are close to me or follow me on social media, you know that my newborn baby had an unexpected heart defect. Many of you have had questions about her diagnosis and what has been going on so I wanted to explain baby Olive’s condition on my blog. I also hope this helps anyone else who is surprised to find out that their child is diagnosed with Tetralogy of Fallot as it affects 1 in every 2,000 babies.

Ian and I experienced both the best and worst days of our lives within 24 hours of our daughter’s birth.  As far as we knew, she was a strong and perfectly healthy baby.  Every prenatal appointment we had with my OBGYN looked perfect and we were never given any reason to be concerned with Olive’s health.  On August 27th, I had the pleasure of meeting our sweet little girl for the first time and just like that, our lives were changed.  She was absolutely perfect.

Just like every other baby, Olive was taken to see the hospitals pediatrician for a checkup shortly after birth.  When the doctor was done with his exam, he visited us with the results.  Olive looked great but he thought he heard a murmur when listening to her heart.  To be on the safe side, she was going to be checked again in the morning to see if the murmur was clearing up or if it was something to be concerned with. Unfortunately, when the second exam was done the next morning, the murmur had worsened.  Because of this, a cardiologist was going to need to see Olive later that day to do a full exam of her heart.

At this point, it was the day after Olive was born and Ian and I were worried but hopeful. My heart sank when the cardiologist came into our hospital room and said he had bad news and needed to talk to us about Olive’s heart. It was at that time that we learned she had been diagnosed with Tetralogy of Fallot.

What is Tetralogy of Fallot?

Tetralogy of Fallot (TOF) is 4 congenital heart defects at once.  Children’s Healthcare of Atlanta lists the defects as:

  1. Narrowing (stenosis) of the pulmonary artery. 

    The pulmonary artery is a blood vessel. It carries blood from the heart to the lungs for oxygen.

  2. Ventricular septal defect.

    This is an opening in the wall between the two lower chambers of the heart (right and left ventricles).

  3. Overriding aorta.

    The artery that carries oxygen-rich blood to the body (aorta) is shifted toward the right side of the heart. It should be on the left side. In this condition, the aorta sits over the ventricular septal defect.

  4. Enlarged right ventricle. 

    The right lower chamber of the heart (ventricle) is bigger than normal.

There are two categories of TOF babies;  pink tet and blue tet.  Blue tet babies have cyanotic episodes also known as a “blue spell.”  A blue spell occurs when the baby gets worked up and there is a lack of oxygenated blood flowing through the body.  We were relieved to learn that Olive was considered pink tet meaning she had never experienced any blue spells.  She would still need surgery to repair her heart but the repair was not as time sensitive as it would have been if she were considered blue tet.

Olive had been home with us for a week before her first cardiology appointment at the Sibley Heart Center at Emory.  We were only 5 minutes into her appointment when she had her first blue spell.  I didn’t even realize it was happening but the nurse pointed out that when Olive started crying, the bottom of her feet and inside of her mouth had turned blue.  We continued with the tests and echocardiogram before meeting with the cardiologist at the end of the appointment.  I knew the news was going to be bad when two people walked into the room with the doctor.  I have now learned that when multiple people walk into the room to give you news, the news is probably going to be something you don’t want to hear.

The doctor let us know that Olive could live a normal life for a while as a pink tet baby, but the blue spell she had in the office changed everything.  She was now considered blue tet and because her condition was worsening as quickly as it was, she would need to be admitted to the hospital immediately.  Not only that, she was going to be put straight into the Cardiac Intensive Care Unit at Children’s Healthcare of Atlanta.  As I’m sure you can imagine, Ian and I were beside ourselves.  We just delivered our baby a week ago and now she was going to be in the CICU.  We were terrifed.

I cannot say enough about how wonderful everyone was at Children’s Healthcare.  They took such good care of Olive and were so kind to Ian and I as we navigated our way through becoming parents and having a newborn with a heart defect.  After many tests and echo’s, we learned that the doctors planned to do a catheter operation with a shunt which would keep one of Olive’s heart valves (PDA) open so she would have a second source of pulmonary blood flow.  By doing this procedure, we are buying time for Olive to grow and gain weight before she has to have her open heart surgery to repair the defects.  An hour after Olive went into the cath lab for her PDA shunt, the procedure was completed and had been successful.

Proof that God is working hard

Olive had her first blue spell in the office of the cardiologist.  The cardiologist was located directly next door to one of the best children’s hospitals in the country.  At one week of age, Olive’s PDA should have already closed just as it does on every single baby shortly after birth.  Ian overheard the doctors say that Olive had one of the smallest PDA valves they had ever successfully shunted. Our baby girl is healthy,  thriving and an absolute miracle.

What Next?

Olive will have her open heart surgery to repair the defect at four to six months of age.  In the meantime, she is considered “medically fragile.”  We will have to lay low, not take her out in public if we can help it, limit people who are trying to drop by our house to meet her and keep a watchful eye.  Catching a cold could result in her being hospitalized and sickness could easily cause dehydration.  It is much harder for her body to recover from illnesses that would typically be normal for other children.  Though it is certainly a sacrifice, we will do anything we need to do to keep our little girl safe and healthy.  Once the repair surgery is done, she will live a normal life, be able to play sports, be active and will not have to worry about blue spells anymore.

Please take a little time to send prayers her way and we will keep you updated on her progress over the coming months.  Olive is resilient and I could not be more proud of this sweet little baby.

Amanda Gaenssley Signature photo http---signatures.mylivesignature.com-54494-178-46A540DDD27E3B722F5EA58150D14859_zpsxiingbfn.png