The world of mommy bloggers is full of heartwarming, heart wrenching and heart breaking stories. Reading through the blogs of my fellow members of this amazing community to which I belong I often find myself laughing and crying for people I don’t even really know. I find myself smiling at the faces of adorable children whom I’ll probably never meet. I find myself learning new things every day from these amazing fellow bloggers. Occasionally I stumble upon a story that just simply breaks my heart. That is what happened a few weeks ago when I first heard about Cora from a friend on Twitter. I read Cora’s story and cried for this tiny little person who was taken from this world and the arms of her parents far too soon. I cried for her parents as they suffered through this unimaginable loss. All I wanted to do was wrap my arms around Cora’s mom and cry with her.
Cora died at 5 days old from Congential Heart Disease (CHD) in the arms of her mom while she was breastfeeding. Her parents brought her home from the hospital thinking she was in perfect health. The doctors and nurses told them she was in perfect health and there was no indication that anything was wrong with her. Congential Heart Disease is a type of heart defect that affects approximate 1 in 100 babies. Cora’s parents didn’t know she had CHD. It wasn’t detected during the routine ultrasounds during her pregnancy and since she appeared to be in perfect health there was no reason for additional testing after her birth. There is one test that could have been done that may have saved Cora’s life and that is a pulse oximetry test. A pulse oximetry test is a non-invasive screening test that measures the oxygen saturation in the blood stream. Pulse oximetry tests on newborns are not standard procedure at most hospitals and so one was not done on Cora. One simple test.
During CHD awareness week Cora’s mom is encouraging everyone to become educated on congenital heart disease, spread the word about pulse oximetry tests so that more infants are tested before leaving the hospital and to spread the word about her precious little Cora. So let’s help Cora’s mom in her crusade to save the lives of babies. Visit The Children’s Heart Foundation and find out more about this silent killer and what you can do to help ensure that no baby goes home before being tested for CHD.
Kristine, you are a true inspiration and I’m happy to do what I can to spread the word on Cora’s story and help you in your fight to save the lives of babies born with CHD.
When we are pregnant we love to dream about what our baby will look like, whether it will be a boy or a girl, what your birth experience will be like and what it will be like to bring that beautiful, perfect little baby home. A majority of pregnancies are normal and end with a healthy baby. However, about 3-5% of pregnancy will result in a child with some sort of birth defect ranging from minor defects like an extra two or finger to major defects like spina bifida. It isn’t part of the fantasy we all have in our mind but it is a reality. During your pregnancy your doctor will discuss your prenatal screening options with you. These screening tests will happen at various stages of your pregnancy and are designed to identify your baby is at an increased risk of certain birth defects.
The conversation with your doctor will likely take place fairly early in your pregnancy. Your doctor will likely just simply provide you with your options and then advising on their recommendations on whether the test would be beneficial to you or not. The actual decision on whether the testing is done is completely up to you. Many things need to go into your decision including what you would do with the information. For example, if you know that under no circumstances would you terminate the pregnancy than you may opt out of the screenings, or if you are one who feels better being prepared for what may be to come you may want to having the screening done so if you happen to get a positive on the screenings you can prepare for a special needs child. Take the information your doctor provides you, ask lots of questions and discuss your choices with your partner. There is no right or wrong decision, you have to do what is right for you.
There are a few different types of screening tests, some during your early pregnancy and some later in pregnancy.
During your first trimester your doctor may recommend an early ultrasound and some blood work. Both these are used to determine if your baby is at and increased risk of having Down Syndrome or Trisomy 18 (another chromosomal defect).
Later in your pregnancy, during your second trimester, your doctor may recommend a triple or quad screening. These are blood tests that look for three or four substances in your blood. The measurements of these substances in your blood are then used to determine your baby’s risk of having Down syndrome, trisomy 18 and neural tube defects such as spina bifida. Second trimester ultrasounds are also used as screening tools to determine the health of the baby and any risk of health issues or birth defects.
The results from the above screenings are not 100% and are often used to determine if further testing, such as an amniocentesis, should be done. Your doctor will discuss the results of your screenings in detail with you and what your options are. Be sure to talk to your doctor if you are unsure about what screenings you should have done or if you are unsure of what the screenings are for.