Grace and Thomas
Our daughter, Grace, entered the world at 12:09 am on December 23, 2008. Before that day my husband and I had no idea children suffered from heart defects. Heart problems happen to older adults not children. I still scream that statement from the depths of my soul.
I intended on giving you a full account of our daughters story but as I sit here typing I am completely devastated. I have decided it isn't the time to revisit the painful story in detail because our 2 year old son was just diagnosed with a heart defect as well. I am angry and still somewhat in shock from just receiving the diagnosis. I will however share the basic details in the hope that it will help others. I did vow when I left the hospital after Grace's surgery that I would do what I could to stop this.
Grace was born with a Congenital Heart Defect called Transposition of the Great Arteries. We didn't know there was a problem until after she was born. With in hours after her birth the on call pediatrician was sitting in front of us saying there was a problem with Grace's heart and she needed to be transported by ambulance to a larger hospital to be diagnosed. At 5:00 am on December 23rd she was whisked away from us. She arrived at Blank Children's hospital in Des Moines, Iowa, where she was diagnosed. By 10:00 am she was being transported by helicopter to University of Iowa Children's Hospital in Iowa City where she would have to have open heart surgery. Without the surgery Grace would die.
Grace underwent open heart surgery when she was 6 days old. That was the longest day of our lives. Grace came through the surgery better than expected. We were told she may come back with her chest open due to swelling. It was quite common to keep the babies chest open for 3 days after surgery. They were able to close her chest right after surgery. She proved to be a fighter.
On January 11, 2009, Grace was able to come home from the hospital. Grace is blessed with 2 big brothers, Thomas 2 years old and Edward 4 years old. We were just a few miles from home, finally all together after weeks of juggling our schedule to make sure all our children had time with us. Out of nowhere, with a sigh of relief, Edward said "We are a family again." When one family member is sick or hurting it affects the whole family, no matter the age.
Grace is now 6 months old. At her 6 month check up her cardiologist took her off all her heart medication. This is remarkable as we originally thought she would stay on medication until she was 1 year old. To look at her you would never guess all she has been through in her 6 months of life.
Now we are looking at our 2 year old possibly having to undergo open heart surgery. I just don't understand. How does this happen? Why does this happen? I took Thomas into the pediatrician a few weeks ago for a virus. He had a fever that was spiking and I was concerned about an ear infection. During the exam the pediatrician found a heart murmur. Nothing to worry about he said. (Not really something the mother of a pediatric cardiac patient wants to hear.) When children are sick you can sometimes hear a murmur. He would recheck Thomas in two weeks. Two weeks later, as I watched the pediatrician listening to Thomas' heart, I froze. He was taking to long. When I saw the look on his face I tried to brace myself. The murmur was still there. Thomas had an echocardiogram that same day. It was sent to Grace's cardiologist in Des Moines. Then last Friday the call came. Our pediatric cardiologist wants to see Thomas. He has a Sub Aortic Membrane under his Aortic Valve. I was maintaining until the cardiologist said this may require OPEN HEART SURGERY to remove. Words I never thought I would have to hear again.
On some level I wish I was strong enough to give more details of how devastatingly painful it is to have children with heart defects. As a Mommy and Daddy knowing your children are hurt and you can't make it better is beyond words. I want the person reading this to understand how necessary it is to bring attention to all the children suffering with heart defects. So we may move forward and find cures. In the future I would be more than happy to share our family's entire story in full detail.
I was asked to write a letter of hope. My hope is my children do not have to endure any more surgery, my hope is my children will live long healthy lives, my hope is our families struggles are not in vain, my hope is something good comes out of this, my hope is I can get through each day with laughter and joy, my hope is I can hold back my tears until each of my children are asleep snug in there beds so they don't see me cry but most of all my hope is no other child and parent would have to endure this.
Sincerely,
Angela Wirth
Ellsworth, Iowa