The internet is a wonderful tool in providing a great means of resource materials. To learn about the details and medical information surrounding Hypoplastic Left Heart Syndrome, we have been able to research this congenital heart defect through internet search engines to find hospitals that perform the Norwood surgeries, doctors' and surgeons' opinions of the surgeries, as well as books available to purchase about other family experiences with HLHS. Because of the limited amount of time we are able to get Jayke out of the house in an effort to avoid sicknesses while he is so young, making purchases over the internet via e-commerce is a huge asset to our family. Also, the information available about this congenital heart defect is very limited because it is still considered to be a "new" defect. So, any information available in any country is extremely helpful.

 

The greatest resource we have available to us is the Holy Bible. Lucado (2002) discusses the importance of going to God in his book Safe in the Shepherd's Arms :

"First, go to Him. David would trust his wounds to no other person but God. He said, 'You anoint my head with oil.' Not, 'your prophets,' 'your teachers,' or 'your counselors.' Others may guide us to God. Others may help us understand God. But no one does the work of God, for only God can heal. God 'heals the brokenhearted' (Ps. 147:3)."

Through devoted time spent with our Holy Father in daily reading of His word in the Holy Bible and prayer, we can accept His blessings and gain wisdom of who He is in every part of our lives. A Holy Bible can be purchased almost anywhere in the US, including through e-businesses on the internet such as the Amazon.com website.

 

 

One of the greatest HLHS resources made available to us is Hypoplastic Left Heart Syndrome: A Handbook for Parents by Anna Marie and Frank Jaworski. They have two sons, one of which was born with HLHS. After being disappointed in the lack of information about HLHS, they decided to record it themselves. They did an excellent job in presenting their story and medical terminology in a manner that has helped so many others understand HLHS better. The Jaworskis help everyone in the family, including siblings try to understand the congenital heart defect and all that is involved in caring for an infant and child with HLHS. The parents’ handbook and several other books that discuss the Hypoplastic Left Heart Syndrome defect can be purchased through their web site, BabyHeartsPress.com. Following is a list of some of their publications:

  • The Heart of a Mother
  • My Brother Needs An Operation
  • Hypoplastic Left Heart Syndrome: A Handbook for Parents
  • Practical Suggestions for Raising a Child with a Heart Problem
  • The Heart of a Father (coming soon)
  • Baby hearts lapel pin
  • 11 Things I Wish My Child’s Doctor Knew poster
  • What it Means to Be the Parent of a Child With a Heart Defect