ALL Babies Should Be Screened for Heart Defects

What is congenital heart disease (CHD)?Congenital heart disease (CHD) is the most common birth defect. Infants with CHD have abnormal structure to their heart which creates abnormal blood flow patterns. Approximately eight of every 1,000 infants born have a form of CHD. Some forms of CHD cause no or very few problems in the health, growth, and development of the baby. However, critical CHD can bring a significant risk of morbidity and mortality if not diagnosed soon after birth. Failing to detect critical CHD while in the newborn nursery may lead to critical events such as cardiogenic shock or death. Survivors who present late are at greater risk for neurologic injury and subsequent developmental delay.

What is pulse oximetry?Pulse oximetry (ox-eh-mah-tree), or “pulse ox,” is a simple, non-invasive and painless test that is used to measure the percent oxygen saturation of hemoglobin in the arterial blood and the pulse rate. Pulse ox was invented in the 1970’s and is now widely used and accepted in clinical care; it is often thought to be a basic vital sign.

How is pulse ox performed?
The pulse ox is placed by a sticky strip, like a band-aid™, with a small red light, or “probe,” on the baby’s hand or foot. The probe is attached to a wire, which is attached to a special monitor that shows the pulse ox reading. The pulse ox test takes just a few minutes to perform. You can help comfort your baby and keep him or her warm, calm, and quiet while the test is being performed.

Why is pulse oximetry used to screen for CHD?
Pulse ox is used to measure how much oxygen is in the blood. Pulse ox is a routinely used test that can be used to monitor an baby's oxygen level during a procedure or treatment. It can also be helpful in determining if an baby’s heart and lungs are healthy. Pulse ox can also help to identify babies with low levels of oxygen in their blood that may have serious heart problems. A doctor or nurse practitioner may ask for more testing such as an ultrasound of the heart, or echocardiogram (or “echo”) when a low pulse ox reading is identified. The echo will screen for a serious problem in the structure of the heart or the blood flow through the heart. Pulse ox can identify a baby with serious CHD before he or she leaves the newborn nursery.

Who should be screened?
All babies in the newborn nursery should be screened.

Information taken from http://www.childrensnational.org/PulseOx/FAQ.aspx

Mommy's Miracle Girl, Tiegan Rae

Tiegan Rae's Story

I found out in September of 2011 that I was pregnant with my fourth child. I was excited, but nervous. The news sank in and joy filled my heart. I went in for my first ultrasound on January 10, 2011, I was so excited to find out whether I was having a little boy or girl. I wanted to see my baby's cute little face on the screen and the beat of it's heart. I sat waiting my turn to go into the ultrasound room with my best friend at my side. She was just as excited as I was! They called us in and the tech began the measurments and showing my all the parts of my baby. I didn't notice while I was in the room, but the tech was unusually quiet. I found out that I was going to have a little girl and I was instantly in love with this little being inside me. I was scheduled for a doctors appointment immediately after my ultrasound so we made our way over to the OB department. We got into the room with the doctor and she immediately seemed a little off from what she normally was. She sat down and explained that they saw some things that were concerning and that she was going to be referring me to Mayo Clinic to get a more detailed ultrasound. My joy was instantly changed to worry and concern. The doctor explained that her long bones were measuring short for her gestational age, that they saw spots (foci) on her heart, and that she had a hygroma. I remember trying to stay strong, but I looked over at my best friend and I just lost it. She tried to assure me that everything would be okay, but I was scared. I had never had any problems with my other pregnancies and I just wanted my little girl to be ok.
Two days later on January 12, 2011 my friend and I sat at Mayo Clinic awaiting my level II ultrasound. The tech brought us back and the findings were confirmed. Something was wrong and I had to find out what, so I had an amniocentesis done that day to try and determine the cause for these issues. I had to wait an agonizing two more days for the initial tests to come back. The wait was the worst and I couldn't think about anything else. I anxiously awaited the phone call from the doctor. When he finally called he explained that they had determined that she had Turner syndrome. I had never heard of this before and immediately after getting off the phone with him I began my research. I wanted to be prepared for what I was going to have to go through, as well as what my daughter was going to have to go through. There was alot of discouraging information out there, and a very slim survival rate, but I kept faith that my little princess would be okay and that I would get to meet her in five months. From that point on it was many, many doctors appointments and I was blessed to have met an amazing OB who was very positive and thourough. She was very real with me about the statistics and what was going on, but always tried to see the positive and that in turn made me positive. I read alot of stories online where the doctors told parents in this situation to abort the baby because the baby wouldn't survive, but I was never told this. It was always the assumption that we would do what we could to save her and I asked as many people as I could to pray for me and the baby.

I remember my doctor telling me that if we could make it to 26 weeks that we had a really good chance of getting her to term. Tiegan had a hygroma, foci and short measurments, but amazingly didn't have excess fluid around any of her organs. I prayed every night and every time I had an appointment I just prayed that her heart would still be beating and she would improve, and every time I went in she had a fabulous heart beat and was moving all over. It made it that much more amazing to see!! I had alot of support from some really amazing people in my life and everytime I felt like breaking down, I called upon God and upon these people to lift me back up. I had to stay strong for my baby and my other kids.
On May 25, 2011 I woke up with an excrutiating pain that shot up from my tailbone to my neck. It was so intense that I couldn't even sit up or move. It immobilized me and it scared me, I thought something was really wrong. It finally stopped after about twenty minutes and I decided that I needed to lay down and rest before I headed into work. At work I started having contractions that lasted all afternoon and were intensifying. After work I decided it was time to go in, I was checked into triage and it was determined that I was in labor and got admitted. They hooked me up to the heart monitor and within 20 minutes the doctor came in and explained that the baby's heart rate was dropping with contractions and that they would leave it up to me whether I wanted to proceed with natural delivery and see how it goes or move ahead with a c-section. I was concerned about her heart rate dropping and just wanted her out so I could see her and ensure that she was okay. For my baby's sake I went ahead with the c-section.

I was immediately wheeled into the operating room and prepped for surgery. My mother was in the room with me and they opened me up to discover that my placenta was pulling away from my uterine wall. My abdomen was filled with blood and the doctor said that I made the right choice. My Tiegan Rae was born at 11:34 pm at 6lbs 2 oz. and 18 inches long. She was a beautiful little girl, but she wasn't crying right away and I sent my mom into the other room to be near her. My mom came back and said that they got her breathing and that they were taking her to the special care nursery. I only got to see my little princess for a few moments as they wheeled her by in her little isolette. Being away from my baby was a very hard thing. I just wanted to hold her, look at her and bond with her.

The following day my daughter was examined by numerous doctors and it was determined by the cardiologist that she had the coarctation of her aorta and would need open heart surgery in the next day or two. On May 31, 2011 Tiegan was scheduled for surgery. Having my daughter in a different building of the hospital, as she was transferred to the NICU was difficult and I had to make many trips over to see her, still in pain from my surgery, but it was worth the pain. Tiegan was beautiful, with a full head of dark brown hair!!

May 31st came and I arrived at the hospital with may dad at 6am and went and held my daughter, not knowing if that was the last time I would see her alive. I took pictures to capture the moments. At 9am they came to take her down and I followed along until the doors where I couldn't go any farther. I said my goodbye and gave my baby girl kisses and told her I would be right here waiting for her when she was done. I had been strong until then, but in that hallway I broke down crying. I wish it could have been me going back to have surgery, not my precious 6 day old baby. I waited in the waiting area, getting updates every so often on what was going on in the OR. Seven hours later, my daughter was out of surgery and I rushed up to the room to see her. She was swollen and hooked up to machines. She was alive though and still as beautiful as ever.


Tiegan came home June 22, 2011. She is such a happy, delightful little girl who has brought so much joy to our family. I truly feel that God blessed me and my baby girl and that she has a real purpose in this life and I am so honored and blessed to have her as my daughter. God Bless!!!