Baby Kyrans’ Story

March 31st, 2013 by Baby Kyran

On 11/24/2012 my son Kyran was born at 30 weeks. He was so precious to me and I was so relieved to see that he was doing so well and breathing on his own. He was born weighing 1lb 13oz and measuring almost 13 inches. The doctors told me that he was small for his gestational age, but when he was admitted to the NICU he was doing so well. Each day in the NICU was always positive news. He had no major problems, but on 12/19/2012 that all changed. We went up to the hospital to see him and the first thing I noticed was that he looked so bloated. The nurse informed me that they had held his feeding and he was awaiting an xray. We waited and after the doctor reviewed the xray, she notified us that he had a disease known as NEC. I had never even heard of this before. The doctor discussed with me the plan of action,and everything was put into place, but by that night she told me that he would not make it through the night.In just 8 hours his condition had progressed so fast that stopping it was almost impossible. My little angel had so many machines hooked up to him at this point, and he didnt even look like the baby I had given birth to. He made it through the first and second night and even had the surgery to relieve the pressure in the abdomen and drain out the excess infection, but on 12/21/2012 he passed away from complications from NEC. I was devestated, heartbroken, angry, everything you can pretty much imagine. Everything had looked so positive, all he had to do was gain weight. I wish that the doctors had informed me of the possibility of him getting this disease beforehand. After learning of the symptoms of the disease, I noticed that at some point or another he demonstrated atleast 3 of the symptoms, but I never would have thought it was more than a little vomiting and diarhea associated with being a normal newborn. I wish I had known more because it would have made me alot more cautious about his care. All along they knew it was a possibility and they never even mentioned it. Like other mothers sharing their stories I have some reservations about the level of care given to my son. The mother in me tells me that there is something else that could have been done. It breaks my heart everyday to think that this horrible disease took the life of my son, my precious little baby. I am torn as to whether or not I should ask for his medical records, because I also declined the autopsy. Everyday I think about my baby and what it would be like if he were still here. He is greatly missed and he is loved very very much.

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4 responses to “Baby Kyrans’ Story”

  1. Shannon says:

    Hello, I am so very sorry to read about your loss. My daughter passed of nec 2 months ago. She also was very strong then all of a sudden gone. My husband and I did not get an autopsy done but we did order the medical records. I too felt that my daughter was not given the level of care that she should have been. I had no idea what nec was until the night before my daughter passed, and I felt extremely uninformed. We had a family friend who is a NICU nurse look over the records to look for discrepencies in the charts. She did not find any but it put our minds at ease knowing that protocol was followed by the doctors and nurses. I hope this helps in some way.

  2. Tiffany says:

    Hi, Shannon.
    Thank you for responding to my post. I’m so sorry that you are going through this ordeal also. I know that it is extremely painful. You telling me that there were no problems with your daughters care has helped me out a little. I also would like to look at my sons medical records to help put my mind at ease. I hope that as time passes you learn to heal and just know that our angel babies are up in heaven looking down on us.

  3. Shannon says:

    Thank you Tiffany. It seems like time stands still too often. I constantly think about how my daughter looked with her bloated belly and how I couldn’t help her. It is very difficult most of the time, I am hoping with time healing will begin as well. Talking to her everyday does help and knowing she is watching over our family gives me some sort of peace inside.

  4. Nicole Rawls says:

    Hello To All
    I had a baby who passed away on February 23rd of this year. She did not have what you all’s children did but she had a heart defect called Tricuspid Atresia along with other heart defects God blessed us with seeing her even make it to be delivered. Due to the defects she had she could have very well not made it through the birth process but she did. Fortunate for her that she was delivered by c section…amazingly she was my only child out of five who had to be delivered that way. I did not know that she had any problems until after her birth. She did so well up until about 8 weeks of age. She started having difficulty breathing and would give out of breath while sweeting heavily and crying inconsolably. She was rushed from our local hospital to Children’s Healthcare of Atlanta. She went through surgery and did well. Her second surgery which she would not come home from didn’t go as well. The procedure was good but her lungs became infected. My husband and I too were told the day of her death that she would not make it through the night. I was really hurt and suffered several emotions during the time we held her for the last time on this earth. Guys I am a follower of Jesus Christ. The Bible says that He is the Way, the Truth and the Life. If you have questions about your children I encourage you to seek God for the answers. I know that my daughter is in heaven and I want to go to her one day but we can’t do that unless we give our lives to God the Father through receiving salvation through His Son. So why won’t you join Him and accept Him in your heart to wash away your sins so you can be reunited with your little ones too! Love Y’all and God Bless!!

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