My name is Stephanie I've never used a chat room to talk to anyone before, so bear with me.
My sister was diagnosed with Cooley's anemia at a very young age. She went through bi-weekly transfusions, while wearing a pump that attaches to a belt for chelation therapy where my mom mixed the medicine herself at home and after school I would have to hold her down while my mom stuck the butterfly needle into her tummy and when her tummy got too hard from all the therapy my mom had to stick her in her leg. When the pump was updated she received a fancier and more compact (complex) pump she could put in a small purse a crossed her chest and the doctors office mixed the medicine for her. When the doctors discovered the pump was not pumping the iron out fast enough (after losing a few organs in the process and getting iron-overload) my sister and the doctors decided to put a portocath in her shoulder. My sister REALLY did not want to do this, but I think she felt she had no choice because her counts were just too high. Just when we though we were in the clear and the months were passing with no issues, she started to get fevers for no reason and sometimes fevers with staph infections in her portocath therefore having to remove her portocath and waiting for the infection to clear up and then putting the portocath back in. After being in and out of the hospital quite a few times in the years after she seemed to level out. She worked at the hospital as a tech for a few years, met a man and fell in love (he also worked at the hospital), got married in 2004 and then went to nursing school and graduated in 2005. After my sister graduated she seemed as if she was on top of the world. She looked and felt great. She always wanted children and was never opposed to adopting, but what she wanted more than anything is to try to have a child on her own just one time and if it didn’t work then she would go the adopting route. So against our mother, father and older sibling and all her doctors’ wishes she ventured out to get pregnant. She searched out the best of the best of fertility doctors and high risk OBGYN.
Side note:
I was always behind anything and everything she wanted to do. I went to all of the appointments with her and even asked her if she would like me to carry for her, but she wanted to do it herself. She was a very smart woman and knew what she wanted out of life. Her husband also stood by every decision she made for herself.
Anyway, she decides to go the in-vitro route and started with the hormone injections and she gets pregnant within five or six months. The first couple of months of the pregnancy she suffered with morning sickness, which was totally normal (having a child of my own I know how that feels) and when that was all over she just felt very, extremely tired all of the time. At her twelve-week appointment she found out she was pregnant with identical twin girls. Which had nothing to do with the fertility drugs because they were identical and not fraternal (our mother is an identical twin). I was so happy for her and shortly after my family let their guards down and started to be happy for her also. As she approached the sixth month of pregnancy she started having breathing difficulties and heart palpitations. She was admitted at the hospital for a couple of days and then released and this went on and off for about two weeks. When she was just two weeks shy of 28 weeks (which is considered developmentally safe for the babies to be born) she was admitted again, but this time the palpitations were worse and the echocardiogram showed she had significant heart damage from the stress of the babies. As the doctors were figuring out what to do she had started getting chest pains and shortness of breath and feeling like she need to throw up or go to the bathroom, so she was making me get her up and down. I had no idea what was going on. So I called for a nurse.
Side note:
I will never in my life forget the look in her eyes. I have never seen this look before. She was scared for those little babies’ lives that she so badly wanted. She knew something was wrong, but she could do nothing about it.
When the nurse arrived she left the room quickly and called the doctor and the doctor told the nurse to administer medication to help her heart calm down (I don’t know what medication it was). Shortly after taking the medication she calmed down and closed her eyes and went to sleep. I called her husband who was working and he rushed to the hospital and I explained the situation to him. When I thought everything was under control I decided to leave to go home. I live over an hour from the hospital and I had my 18-month-old child with me and needed to get her home for dinner and bedtime. As I get home and just get my little one cleaned up for dinner, the phone rings, it’s mother saying after I left she arrived at the hospital while they were doing an ultra-sound and the doctors discovered that she lost the babies. I was in shock, sad, angry and scared for my sister. I had so many questions, but my mother couldn’t answer anything. The next morning I show up at the hospital at 5:30 am. I knew my sister’s husband was still there cause he usually sleeps in the room on a recliner when she is admitted. As I got to the room the door was closed and I didn’t know if they wanted to see anyone. So I waited outside the door until our parents came (almost 2 hours later). Not knowing what happened the day before when I was with her and not knowing what to expect when I went in the room was so scary for me. I did not expect her to be pregnant still. I knew she never planned to have the twins vaginally and decided on a C-section in the beginning. I was very surprised when she was still very pregnant when I walked into the room. I expected not to see the big bump under the hospital blanket. All I could think about was what was my sister was thinking. I knew she knew she lost the babies and I knew she knew she was still pregnant. The doctors were now getting aggressive with the medication they were administering to her to get her heart ready for the surgery.
Her heart grew a little stronger and five days after she lost the twins she final had the surgery to remove them. After they removed the babies her heart rate was still going up and down and none of the medications were working. Five days after the C-section they told us that they were going to try again to stabilize her and send her by ambulance to Columbia Presbyterian Hospital in New York to see if they can get her on the heart and liver transplant list, which I didn’t understand, her being so weak how could they do that? I now know they were just buying time because there was nothing anyone could do for her. She passed away the morning after Saturday. February 18, 2006.
I just miss badly
Thanks again for listening