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Kimberly Woelfel
Kimberly Woelfel • 2 years ago

CHD awareness week Feb 7-14th After a perfect and uncompilcated pregnancy my daughter Delaney was born. My perfect little baby girl...or so we thought. After 30 hours of labor and lots of visitors it was finally time for me to sleep. I handed my daughter off to one of my best friends to hold while I tried to recover and get a couple hours sleep. I woke up to the sound of the nurse entering the room. "Time to give her a bath" she said. She took my baby from my friends hands, unwrapped her from her blanket, and noticed that her hands and feet were still purpleish. She asked to take her to the nursery for her bath and I agreed. Next thing I know I hear "CODE BLUE IN THE NURSERY, CODE BLUE IN THE NURSERY" From that moment on my life was NEVER the same! The next 36 hours where filled with absolute fear and terror. I never cried so hard in my life! I also had never really prayed to GOD before but that's ALL I did for the next few hours. I felt so weak, like I had no control, and if I lost my baby girl I would not make it. I literally felt like if she died that I would die too. It was the scariest day of my life. The next time I saw my baby she was on a ventilator and heavily sedated. I wasn't even allowed to touch her because the nurses didn't want her to get agitated. Looking at the monitors I remember her o2 levels were in the low 80's. That was way below the normal healthy range of 99-100% After running some tests, an echocardiogram, and sending over a transport team from CHOC, she was transported to the children's hospital. It was so hard not being able to go with her. I had to stay in one city while she was fighting for her life in another one. I didn't eat, I didn't sleep. I could only cry! After numerous phone calls from the doctor's at the children's hospital there was a diagnosis. My daughter had TAPVR, a rare congenital heart defect occurring in 1/15,000 babies. Basically the veins from her lungs were supposed to attach to her heart and they didn't. They rerouted themselves through her diaphragm and down into her inferior vena cava. They told me she needed emergency open heart surgery. My heart sunk. I was lost. I never prayed so hard. I prayed that if God had to take her that he take me too. I couldn't bare the thought of living without this child who I had just met. She was already the center of my universe! The next morning I was released from the hospital and rushed over to see her. she was so tiny and there were so many wires. I had about an hour with her until she was taken into surgery. Not knowing if this was going to be the last time I saw her alive, I kissed her forehead, my tears dripping all over her face, and told her I loved her and to be strong. The next few hours seemed like days. Then finally the doctor came out to tell me the good news. She had made it through! The surgery went well and I could go see her in about an hour. I thanked God and cried tears of joy! The road has not been without bumps since then but I thank God everyday for blessing my with such a miracle.

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Norah was born with heterotaxy, an ASD, VSD, interrupted IVC w/ azygos continuation and a touch of pulmonary stenosis, polysplenia (she has 2 functional spleens), an intestinal malrotation and some minor hydronephrosis. Norah has had 2 surgeries in her short life - the first, a Ladd's procedure, was when she was 5weeks old to correct her intestinal malrotation, and her second, the open heart surgery (1st post, 2nd post), was when she was 9.5months old to close her VSD. We were fortunate enough to know she'd have a CHD before birth. It was a tough to go through the pregnancy not knowing what would be wrong with her (bad news started when I was about 12w along), but always loving her. She was, and IS, perfect. It took a long time to remember that she was perfect (at least to me) before I knew about her conditions and that they didn't change anything. She was still the baby I loved, she'd just have a more colorful story than some.

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This is my son Max. I had the perfect pregnancy and he was born perfectly healthy and weighed 8.5 lbs. He was a very fussy baby and I mentioned this to the doctors. They said it was gas. In the last two weeks of his life there were small changes, but I thought it was all normal baby behavior. On November 15th I left him for a minute or two, but my husband was in the room. I come back in and he is raising towards Max. He told me something was really wrong with him, and he stopped breath. He was rushed to the hospital and they could not revive him. We thought he choked. The next day we found out he had an undetected CHD. Max is 1 in 100 and lost his life to a rare CHD called Alcapa. We did not know the signs, and if we did this could have been prevented.

This is our sweet girl, Charlotte. We found out at my 20 week appointment that we would be having a baby girl, but the technician could not get a good picture of her heart. The next 72 hours took us from elation to complete uncertainty. Charlotte was first diagnosed with aortic stenosis and then a few weeks later it was determined that she had Hypoplastic Left Heart Syndrome {HLHS}. We were lucky to be under the care of doctors with Duke University, and they certainly made the rest of my preg...

Chd Awareness!

In honor of Congenital Heart Defects Awareness and my Aleah born with Pulmonary Atresia and Ventricular Septal Defect Our precious baby girl came into this world with a broken heart. We had to face the fact that when she came into this world God may take her to heaven because her heart had not developed properly before her birth. She was born with two congenital heart defects. She had her first open heart surgery at nine days old. This was a surgery just to buy her time before she would have to have a full repair of her heart. We hated handing our tiny fragile baby girl over to the surgical nurses not knowing if we would ever get to hold her in our arms again. She made it through her first heart surgery but when we saw her for the first time, we were shocked by the way she looked. No parent should ever have to see there new born child laying there looking lifeless with every wire and machine known to man keeping them alive but sadly we did. So many others have had to see their tiny babies just the same way. Aleah is a fighter and a miracle and she made it through her first surgery. She had to have her second open heart operation at 7 months old. This was in a way was harder than the first because I knew when I handed her over to the surgical nurses what she was facing, a very serious open heart operation that she had to have in order for her to live. It broke my heart to hand her over a second time. All I had to rely on were my prayers and all I could do was plead with God not to take her from us. Our sweet little girl again made it through a second open heart surgery and we couldnt have been more thankful to God for pulling her and us through those very dark hours. Aleah is now four years old and her heart is functioning well for the time being. Sadly she will need a third open heart surgery in a few years time. When you have a baby with a broken heart your heart journey is never over, and all you have to rely on are the prayers that you lift up to God. 1 out of every 100 babies born will be born with a congenital heart defect. This can happen to anyone, it happened to us. Please support CHD Awareness in anyway you can, with your support we hope someday to find a way to help prevent these heart defects from happening to any baby born.