Pulse oximetry, a non-invasive test that can measure the oxygen level in the blood, may be useful in screening newborn babies for CHDs. Ask your pediatrician about doing pulse oximetry after the birth of your baby.
Our organization was founded after our daughter, Taryn, unexpectedly passed away from 2 CHDs. It was from this experience that we learned about the most common birth defect.
To our beautiful daughter, Taryn:
We anxiously awaited your arrival and we still can’t believe that you are gone. The times that we had with you were the BEST and YOU make our lives more beautiful and meaningful. We love you and miss you so much; our arms ache for you! There isn’t a day or moment that goes by where you aren’t in our thoughts. You are a blessing and you brought so much happiness and love into our lives and hearts.
Taryn, you are like a shining star…always shining bright and beautiful.
Always and Forever,
Mommy and Daddy
Pamphlets can be printed and distributed as long as the contents are not altered.
By distributing CHD awareness pamphlets, we hope to raise awareness to the most common birth defect.
This is our story about our beautiful daughter and our tragic journey with CHD.
I was 29 years old and pregnant with my first child. We were so happy and excited…our child would be the first grandchild on both sides and the first great grandchild and great-great grandchild on my side. We followed all the rules and read all the books. We took the prep courses (there were 4) to prepare for our daughter’s arrival. When we learned that we were having a girl, I was excited and my husband was SO happy – a daddy’s girl. I just wanted a healthy baby and I prayed every night for 2 things – that we are safe and healthy. We took great care to interview doctors and daycare options; we wanted the best for her and I wanted to feel confident about our choices. Taryn arrived and we were tired, but SO happy. She had a full head of black hair and beautiful, pouty lips. She melted our hearts.
Taryn had jaundice, so we had more doctor appointments than usual. After Taryn’s 2 week appointment, everything checked out. No more jaundice and she passed her birthweight and grew an inch. Life was good. Our biggest concern was keeping her warm, keeping her well fed, and keeping her healthy during RSV season.
On Wednesday, January 7, 2009, Taryn cried and I picked her up changed her and wiped her eyes (she had a clogged tear-duct on her right eye). She was very upset by all of this and I tried to console her by swaddling her, closing one of the blinds to make the room darker, holding her in different positions, using the pacifier etc. She stopped crying and made these wahhh wahhh noises (she did this the week before after she cried and stopped and everything was fine) and I held her while I talked to my friend that was a NICU nurse and a mom. We talked about colic etc and she asked me about Taryn's color and breathing and when I looked, Taryn’s color hadn’t changed and she was still breathing. Taryn, did make the wahhh wahhh sounds longer that day than she did the previous week. I could tell that it was time to change her diaper so I laid her down on the changing table and saw her breathing, but I could also see her ribs when she took a breath and I knew something was wrong. Her color looked good, but something was wrong. Right before my eyes, I saw her stop breathing and I put my hand on her chest to feel for shallow breathing. I panicked, and touched her feet and rubbed her chest and she moved, but I didn’t see her breathing so I started CPR and called 911. I kept screaming for her to open her eyes and kept saying, “Taryn please!”….. I remember telling the operator to call Steve. I know that I didn't do CPR correctly because I was shocked that all this was happening. I did breaths and compressions, but it wasn't the 2 breaths to 30 compression ratio.
When I heard the sirens, I ran downstairs with Taryn and opened the front door and the policeman and I did CPR until the EMS team arrived. Steve called home and I said, "Taryn stopped breathing, I started CPR, meet me at * ER". We threw the phone in the yard and drove off. I sat in the passenger seat of the truck and when we drove off, I remember seeing the front door open and Tex (our dog) was at the door and I didn't have on shoes. I also saw my neighbor sitting in my front yard crying. I was in the front of the ambulance and I remember crying so hard and being so shocked that the driver told me to calm down so he could do his job. I remember seeing everyone working on Taryn at * ER, Steve was there and I kept thinking….“what did I do wrong”? The nurse told us that they got her pulse back and that she was not breathing on her own. The neonatologist talked to us and explained that her heart wasn't enlarged based on the chest x-ray but her PH level was 6.5 because she was down for so long and that this is not good news. I told them that I tried doing CPR, but they explained that CPR isn't enough to sustain her for a long time. I was so shocked and scared.
After Taryn was stabilized, she was Careflighted to the children’s hospital. Prior to leaving the ER, she opened her eyes and we talked to her and kissed her between all the tears.
In the PICU, they were ruling out 1) SIDS 2) seizure disorder 3) metabolic disorder 4) meningitis. About 11pm, the cardiologist talked to us and explained that Taryn has a congenital heart defect (CHD) called TAPVR (Total anomalous pulmonary venous return :infra-diaphragmatic) which would require open heart surgery. Taryn’s pediatric cardiologist (PC) said that she did not have a heart murmur. They said that the 1st 24-48 hours were critical for her neurological status to see if it even makes sense to move forward with open heart surgery. I heard pulmonary hypertensive crisis while Taryn was in the PICU, but I couldn’t process anything.
Many other doctors saw Taryn to find another defect, but everything came back negative. After many tests and after we passed the 24 hour period (MRIs, EEGs, CAT scans etc) they told us that Taryn was basically in a vegetative state. She was doing worse and not making any positive improvements. I was worried about RSV, but not this. The alarms kept going off on Thursday night and they said that she wouldn't likely make it through the night. We let family see her and we held her and laid in bed with her all night. We couldn't ignore the alarms all night long and we couldn't stop staring at the monitors. She had lines everywhere and you couldn't see her beautiful face and the pouty lips that everyone commented on.
After Taryn passed, I reviewed her medical records and the pathology findings / autopsy results; there is significant evidence that Taryn’s "event" when she stopped breathing was related to a pulmonary hypertensive crisis. Taryn also had a second heart defect, Atrial Septal Defect (ASD) that allowed her to live as long as she did. This second heart defect, ASD, also masked any symptoms to warn us. I guess in most cases, as the ASD closes, we would have starting seeing symptoms.
I couldn’t accept the fact that Taryn had a CHD and no one knew…..no symptoms. How does this happen? I obsessed over every detail that I could remember. We didn’t get a chance for surgery….we didn’t get a fair chance. I tell Taryn everyday that I am sorry that I couldn’t save her. I didn’t know……..
While I was pregnant, I never did research on birth defects….if I did, I would have found out that heart defects are the most common birth defect. There is no standard screening to look for CHDs. I would have asked for an echocardiogram on my way out of the door and paid out of pocket instead putting money into her college fund. I wouldn’t have cared if insurance wasn’t going to cover it.
Now that I know that the #1 birth defect is CHD; I am wondering why we don’t see of commercials or pamphlets on this topic. I think that more should be done on CHD awareness– knowing is half of the battle. Early detection and intervention is key....you can't fix the problem if you are not aware of the problem. I won't gamble on "maybe" finding out later with hopes of the "best" possible outcome. Many congenital heart defects have few or mild symptoms and some heart defects aren't found until later on in life. Many people with heart conditions don’t get as many chances for treatment; once they are gone, so is their voice and story…………..our daughter is gone and we have to be her voice.
We are still in disbelief that our beautiful daughter is gone. Taryn’s incident happened on a Wednesday and we lost her on a Friday…..in 2.5 days, besides losing our daughter, we lost hope, our dreams, our family, and our future.
From a mother and father with a broken heart, the pain is very real, and it’s a pain and emptiness that you feel and live with everyday. Losing your child is one of life’s greatest tragedies; our arms ache for her. We have to do something to make a difference for other families. We want Taryn to look down and be proud of our efforts to make a difference with CHD awareness.
ALWAYS check with your doctor if you have any questions or concerns about a condition. Our goal is to help raise awareness through our experience of losing our daughter to a CHD. The material on this website is intended to provide information, support, and links for furthur research to the reader.
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