Friday, February 8, 2013

Congenital Heart Defect Awareness Week

Before Cora was born, heart defects were not something I thought much about.  A few years ago, a friend's new baby had open heart surgery with success, but it still felt like something that hadn't touched me personally.  All that changed when we were told that the reason our one day old baby was turning blue was because she had a serious heart defect that would require open heart surgery between 2 and 4 months of age.

Cora had a complete atrioventricular canal defect, which is one of the most common heart defects in babies with Down syndrome.

Research shows that without surgery, only 4% of children with complete AVSD (or complete AV canal defects) survive beyond 5 years.  In Cora's case, I sincerely doubt she would have survived to four months old.  She was in serious heart failure at the time of her surgery at 11-1/2 weeks old.

Of all the blessings in my life, I am most grateful for Cora's successful heart surgery.  Without surgery she would have had no chance at a life. 

Congenital heart defects are the most common types of birth defects.  Almost 40,000 babies are born with CHDs in the United States each year.  For children with Down syndrome, the incidence is much higher than the typical population.  Current information shows that approximately 40-60% of babies with Down syndrome have a heart defect.  About 35% of these children have AV canal defects like Cora.  Some of the more minor defects will repair themselves without surgery, but many require surgery.

Knowing that your tiny baby will have open heart surgery is something that no one wishes for their family.  In fact, many decisions to terminate pregnancies with a prenatal diagnosis of Down syndrome are due to the presence of a heart defect.  But as I have learned, the prognosis for children with Ds and a heart defect is very good.  Most defects can be successfully repaired surgically or resolve on their own in time.  Although stressful and painful, a diagnosis of Down syndrome and a heart defect is not as dire as it once was.

Since Cora was born, I have been in touch with so many other families whose children have undergone open heart surgery.  Some of them feel almost like family.  Many of their stories helped me as I prepared for Cora's surgery, and they inspired me to do the same for other families down the road.  I began to compile a list of blogs, stories and advice written by other parents of children with Down syndrome who have had surgery.  I only hope that our story and the stories of other families like ours can continue to help others who will go through this experience in the future.

If you would like to share your family's story about Down syndrome and open heart surgery or congenital heart defects on this blog, I would be honored to post it here.


  1. That picture of Cora just breaks my heart. So many tubes, wires, and incisions. Btw, LOVE love love the new header.

  2. Great Post Leah! Spreading CHD awareness!

  3. This comment has been removed by the author.

  4. Congenital heart defects are the most common birth defects that may a child had to suffer. It is very heart breaking looking at this child in the picture. Sometimes we even wish for to replace them on their situation just to save them from pain. Spreading CHD awareness.

  5. Thank you very much for an interesting article on this topic. This has really made me think and I hope to read more.
    Zofran heart defects

  6. Enjoying reading your OHS posts as we prepare for our daughter’s coming up June 26th. Thank you for posting all the pics too— they help SO much!

  7. Here is a great herbal doctor who cured me of Hepatitis B. his name is Dr. Imoloa. I suffered Hepatitis B for 11 years, I was very weak with pains all over my body my stomach was swollen and I could hardly eat. And one day my brother came with a herbal medicine from doctor Imoloa and asked me to drink and I drank hence there was no hope, and behold after 2 week of taking the medicine, I started feeling relief, my swollen stomach started shrinking down and the pains was gone. I became normal after the completion of the medication, I went to the hospital and I was tested negative which means I’m cured. He can also cure the following diseases with his herbal medicine...lupus, hay fever, dry cough, diabetics hepatitis A.B.C, mouth ulcer, mouth cancer, diarrhoea, liver/kidney inflammatory, eye cancer, skin cancer disease, malaria, chronic kidney disease, food poisoning, parkinson disease, bowel cancer, bone cancer, brain tumours, asthma, arthritis, epilepsy, cystic fibrosis, lyme disease, muscle aches, fatigue, alzhemer's disease, acute myeloid leukaemia, acute pancreatitis, chronic inflammatory joint disease, Addison's disease back acne, breast cancer, allergic bronchitis, Celia disease, bulimia, congenital heart disease, cirrhosis, constipation, fungal nail infection, fabromyalgia, (love spell) and many more. he is a great herbalist man. Contact him on email; You can also reach him on whatssap- +2347081986098.

  8. My name is hoover, my 18 year old daughter, Tricia was diagnosed with herpes 3 years ago. Since then, we have moved from one hospital to another. We tried all kinds of pills, but every effort to get rid of the virus was futile. The bubbles continued to reappear after a few months. My daughter was using 200mg acyclovir pills. 2 tablets every 6 hours and 15g of fusitin cream. and H5 POT. Permanganate with water to be applied twice a day, but all still do not show results. So, I was on the internet a few months ago, to look for other ways to save my only son. Only then did I come across a comment about the herbal treatment of Dr Imoloa and decided to give it a try. I contacted him and he prepared some herbs and sent them, along with guidance on how to use them via the DHL courier service. my daughter used it as directed by dr imoloa and in less than 14 days, my daughter recovered her health. You should contact dr imoloa today directly at his email address for any type of health problem; lupus disease, mouth ulcer, mouth cancer, body pain, fever, hepatitis ABC, syphilis, diarrhea, HIV / AIDS, Huntington's disease, back acne, chronic kidney failure, addison's disease, chronic pain, Crohn's pain, cystic fibrosis, fibromyalgia, inflammatory Bowel disease, fungal nail disease, Lyme disease, Celia disease, Lymphoma, Major depression, Malignant melanoma, Mania, Melorheostosis, Meniere's disease, Mucopolysaccharidosis, Multiple sclerosis, Muscular dystrophy, Rheumatoid arthritis Alzheimer's disease, parkinson's disease, vaginal cancer, epilepsy Anxiety Disorders, Autoimmune Disease, Back Pain, Back Sprain, Bipolar Disorder, Brain Tumor, Malignant, Bruxism, Bulimia, Cervical Disc Disease, Cardiovascular Disease, Neoplasms , chronic respiratory disease, mental and behavioral disorder, Cystic Fibrosis, Hypertension, Diabetes, Asthma, Autoimmune inflammatory media arthritis ed. chronic kidney disease, inflammatory joint disease, impotence, alcohol spectrum feta, dysthymic disorder, eczema, tuberculosis, chronic fatigue syndrome, constipation, inflammatory bowel disease. and many more; contact him at also with whatssap- + 2347081986098.


Thank you for sharing your thoughts with me!