Mom to Kayla LeAnne
December 1, 2009
and David Joseph
September 20th, 2010 – January 20th, 2011
Parma Heights, Ohio
Having a baby was never easy for me. I had my first miscarriage at 12 weeks in September 2001. My second miscarriage at 5 weeks was in March of 2005. My third and last miscarriage at 7 weeks was march of 2007. In January of 2008 I was pregnant again and I thought for sure I would miscarry again.
Fortunately, that was not the case. I did, however, have a very difficult pregnancy. I developed preeclampsia and had alot of swelling. I was induced at 38 weeks and gave birth to a healthy 7 lb baby boy, he is our miracle as we call him. When my son was a year old we decided to start trying again. We didn’t want him to be an only child, and we knew that it could take a while before we had another successful pregnancy. We got pregnant right away, a week after his 1st birthday! I was having some cramping and thought for sure I was miscarrying again. All of my HCG levels and the ultrasound were perfect! They said the heartrate was exactly where it should be! We were out of the woods! Or so I thought since I had always miscarried early and never got to hear or see a heartbeat. We went in for my 12 week ultrasound and everything to us look wonderful! We could see the baby bouncing around and we could see the arms and legs! My husband took my son to the car as I waited to see the doctor. He came in the room and instantly I knew something was wrong. But how could there be something wrong? I saw the baby moving and heard the heart beat! Anencephaly was the next thing I heard as he gave me a hug.
We went to another doctor the same day for a second opinion. Same diagnosis. A major part of the baby’s brain and the skull from the eyebrows back hadn’t developed. There was 0% chance of survival and the baby probably wouldnt have made it through birth, if not sooner. We were advised to terminate the pregnancy. And we did. I regretted more than anything in the world. How could I kill my baby!? It was not my decision to make, it was God’s, but I did it. We had genetic testing done and everything came back normal. Anencephaly is not a genetic mutation, it is a mishap in development. We also found out we were carrying a girl. Kayla LeeAnne. Genetic tests were run on me and we found out I had a mutation called MTHFR. It is a clotting disorder and causes your body not to absorb folic acid properly. It can also cause neural tube defects, miscarriages, preeclampsia, placental abruptions, and recent studies suggest heart defects. Folic Acid is a key nutrient in development of fetuses.
We decided to start trying again right away. We conceived in Feb 2010. I was due Nov 8,2010. All of the ultrasounds looked perfect, the heart rate was perfect, the head perfect! I had a pretty good pregnancy. I wasn’t gaining a lot of weight, wasn’t nearly as sick or tired as I was with my son, never had blood pressure issues, and no swelling.
On September 19th, I started having contractions and went to the hospital. They werent consistent, but wouldn’t stop. I also had sharp shooting pains in my right side. At 1am I started bleeding, and bad. My doctor came in and said we were doing an emergency Csection because my placenta abrupted (separated from my uterus). “NO!! He’s not due for another 7 weeks!” I was terrfied! They assured me that he would be ok and would probably just have to spend a few weeks in the NICU learning to breathe and eat. He was beautiful! Nice and pink and screaming! He even gave the doctors a present, he peed on them! He started having problems breathing so they had to rush him to be intubated. 5 hours later a doctor walked into my hospital room and my heart sank. he said “your son has hypoplastic left heart syndrome, only half of his heart formed”. His heart wasnt able to pump blood out to his body. How could this happen, he was perfect in ultrasound! Put him back inside of me and let him finish growing. It had nothing to do with being premature. Heart defects go undiagnosed sometimes, sometimes its hard to see on ultrasound.
He was rushed to the cleveland clinic and I followed him the next day. He had his first surgery on September 24. They had a lot of problems getting things just right with his heart, this lead to him having 5 heart surgeries and 5 catheterizations (they access the heart by putting a catheter through the groin and following the vein into the heart). He had 3 stents in his heart to help redirect blood flow. Each stent fixing that problem, but causing another. Because of the lack of oxygen to his brain from being premature and having a heart condition he developed PVL, brain damage. He also had a clot form in his heart that broke off and went to his brain, causing a right sided stroke. Because of this, the left side of his body was very weak. All in all though, he was doing very well, until he wasn’t.
He was scheduled to have bypass surgery in late January. In preparation for surgery his brain waves were monitored. It was discovered that he was having 20 silent seizures per hour in the area where the stroke was. He also had his 5th catheterization around this time which caused a tear in his pulmonary valve, causing his heart to work even harder. On January 13 we were told there was nothing more they could do for our little boy. They brought an adult sized bed in and moved us into a more private room. David passed on January 20 after 4 months in the hospital, never getting to go home. I spent the entire week in bed with him, cuddled up to him. He had a fever and a breathing tube, so he was very uncomfortable being held, but he loved me cuddling him, rubbing his head. I can still sometimes feel myself running my fingers through his hair, smelling him, kissing his fingers. I miss him, I miss him so so much. My 2 yr old still asks to “go to davids house”. We just tell him that David lives with Jesus in Heaven and then change the subject.
People think it should be easier because he was just a baby and we never “got to know him”. But I knew him. The part that kills me is not knowing what he would have been. He taught me about myself, and about life than I ever knew. I dont regret one second I had with him, and I wouldnt change it for the world. I miss you peanut.
Becki has a website for David at www.caringbridge.org/visit/davidlibby
You can contact her at firstname.lastname@example.org