Taryn and Mama

Taryn (12/11/08-1/09/09)

I was 29 years old and pregnant with my first child.  Our child would be the first grandchild on both sides and the first great and great-great grandchild on my side.  We followed all the rules and read all the books.  We took the prep courses 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 two things – that we are safe and healthy.  We took great care to interview doctors and daycare options; we wanted the best for her.  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 and we had home health for the bili blanket and checks.  After Taryn's two week appointment, everything checked out.  No more jaundice and she passed her birth weight and grew an inch.  Life was good.

Steve went back to work and the first thing he would do when he came home was to hold her.  A week later, Taryn and I went for our first trip by ourselves to buy diapers.   When we came back, I took her out of the car seat and laid her in the crib.  Shortly after laying in her crib, she cried because she was gassy and had a dirty diaper.  I picked her up and ran some warm water and cleaned her up and wiped her eyes and she was still crying.  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.  I phoned my friend that was a NICU nurse and a mom and talked about colic, Taryn's color and breathing. When I looked, her color hadn't changed and she was still breathing.

When I was changing her diaper, I watched her breathing and noticed ribs when she took a breath.  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 freaked out, 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 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 Baylor ER."

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 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 in the emergency room.  The nurse told us that they got her pulse back and that she was not breathing on her own.  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 Cook Children's in Fort Worth.  Prior to leaving she opened her eyes and we talked to her and kissed her between all the tears.  They asked me if I wanted to be in the helicopter with her but I chose to ride with Steve because I was so scared and shocked and he was too.

Many doctors saw Taryn, but everything came back negative.  After many tests (MRIs, EEGs, CAT scans, ect) they told us that Taryn was basically in a vegetative state and that open heart surgery wasn't likely if quality of life was a factor.  She was doing worse and not making any positive improvements.  The alarms kept going off on Thursday night and they said that she wouldn't likely make it through the night.  We opted for DNR and let family see her and we held her and laid in bed with her all night.

After Taryn passed, I was numb for one week and we left town.  After we came back, I spent all my days looking for answers on TAPVR symptoms.  She was gaining weight, I never noticed any cyanosis, and I never noticed any breathing difficulties until that day.  What did I miss? I never counted her respirations and never took off her clothes to see her breathe... did I miss something? The doctors explained her heart defect to me at first and I didn't process.  I asked for her to explain again–nothing. 

I have been asking a lot of questions and I talked again to Taryn's cardiologist.  They reviewed her medical records autopsy results and they think that when she stopped breathing, this was related to a pulmonary hypertensive crisis.   She explained that Taryn also had a huge ASD that allowed her to live as long as she did.  This second heart defect masked any symptoms to warn us.  Doing research on Taryn's heart conditions was something that I have done to better understand what happened to our baby girl and maybe get some desperately needed questions answered.  I was obsessed about knowing more and I focused on finding out more on the heart defect or whatever it was that took my beautiful daughter away.

I couldn't accept the fact that Taryn had a CHD and no one knew.  She didn't have symptoms.  How does this happen?  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 the heart defects are the #1 birth defect.  I would have asked for an echo on my way out of the door and paid out of pocket instead of putting money into her college fund.  I wouldn't have cared if insurance wasn't going to cover it.

Why don't we see commercials or pamphlets on this #1 birth defect.  More should be done on CHD awareness–knowing is half of the battle.  Many people with heart defects don't get as many chances for treatment; once they are gone, so is their voice and story.  My daughter is gone and I 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 family, and our future.

From a mother with a broken heart, the pain is very real, and its a pain and emptiness that you feel and live with everyday.  Losing your child is one of life's greatest tragedies.  I have to do something to make a difference for other families.  I want Taryn to look down and be proud of my efforts to make a difference with CHD awareness.