June 3, 2010
Dear Family and Friends,
Yesterday we received some very disappointing news. After an ultrasound in Little Rock, it was discovered that our little girl has a major heart defect as well as some other issues. We were immediately sent over to Children’s for a heart scan. From the scan, we found that she has a heart condition called Hypoplastic Left Heart Syndrome, which, very simply put, means that the left side of her heart has not developed properly. We had an extremely nice heart doctor, Dr. Best. The condition is “correctable” by 3 separate heart surgeries which would be at 1 week, 6 months, and then 3 years. Dr. Best explained that the surgeries are rather complex, but have a fairly good success rate. The surgery has been performed for the past 20 or 30 years, and many children do considerably well with the expected issues of any heart patient. He told us that some children in their teens do have to be put on a heart transplant list if what has been done in the surgeries “loses its effectiveness”, for lack of a better way of explaining.
Obviously, the heart is the major concern. There are secondary concerns that were seen on the ultrasound that could change things. I have an excess amount of amniotic fluid. In association with that, the doctors do not see any fluid in her stomach, which indicated to them that she might not be swallowing. Dr. Best said this is not related to the heart, so it could be any number of things. Because of the fact that there is more than one issue going on, the doctors have suggested that we do an amniocentesis (where they draw amniotic fluid and test it) to see if there are any genetic or chromosomal abnormalities. This test has risks, but, at this point, we feel the information we would receive would out-way the risks. Ultimately, if we found out that she has genetic or chromosomal abnormalities that would be limiting her life to a few days or weeks, we would be better prepared to make the decision of whether or not to put her through a heart surgery at one week of age.
She will be delivered by C-section at UAMS in Little Rock presumably before my due date (July 30th) and then taken immediately to Children’s Hospital to begin testing and hopefully finding out more of what we are facing. If all other issues go away and we just had the heart issue, she would have the surgery at one week of age and then would be at Children’s for 1 to 2 months for recovery. At this point the unknowns are the other issues that she could be facing.
God has already been gracious…we were supposed to have this ultrasound in Fort Smith at St. Edwards but they could not get us in. So we were extremely thankful that we were in Little Rock yesterday so that we were close to the best doctors. They were unbelievably thorough and very kind. We obviously need a lot of prayer right now…for Philip and me, that God’s grace will continue to be sufficient for us to deal with what’s ahead, and that we will have wisdom and discernment to make the decisions that may possibly be ahead of us. No matter the outcome, our lives have changed in a day. Also, my amniocentesis has just been scheduled for tomorrow at 1:00…please pray that this procedure goes well. For Eliana, that she will be able to deal with the changes that are ahead. And, for our little baby girl…my prayer for her now is that she will not have to suffer needlessly, that God would be glorified, and that if God wants her to be here with us, that she will have a good quality of life.
Thank you all and we love you very much,
Kerry, Philip, and Eliana Morton