Time for a new test of technology. The Blog. My hope is that this will reach everyone a little more efficiently. Please pass this address on to anyone who would like to keep up with the goings on of Christopher, Emily, Aiden, and Ella Hawkes. Hopefully this solves the spam problem as well.
First, I think there is some confusion out there of what is ahead for the family. Ella has Hypoplastic Left Heart Syndrom (HLHS). HLHS is a rare congenital heart defect in which the left side of the heart is severely underdeveloped.
In a healthy human, the left side of the heart receives oxygen-rich blood from the lungs and pumps it out to the rest of the body; with these structures underdeveloped, they cannot circulate blood to other organs, and the right ventricle must pump blood to both the lungs, as it would normally, and to the rest of the body, a situation which cannot be sustained for long.
In cases of HLHS, the right side of the heart often must pump blood to the body through a patent ductus arteriosus. As the ductus arteriosus usually closes within eleven days after birth, blood flow is severely restricted and eventually cutoff, leading to dangerously low circulation and eventually to shock.
Without life-prolonging interventions, HLHS is fatal, but with intervention, an infant may survive. A pediatric cardiothoracic surgeon may perform a series of operations or a full heart transplant. In the meantime, the ductus may be kept open to allow blood-flow using medication containing prostaglandin. Because these operations are complex and need to be individualized for each patient, a cardiologist must assess all medical and surgical options on a case-by-case basis. For Ella, the only surgeon that can perform this is in Palo Alto CA.
Currently, infants who undergo either the staged reconstructive surgery (Norwood procedure almost immediately after birth, Glenn procedure at 3 to 6 months of age, and the Fontan procedure at 3 to 5 years of age) or who undergo cardiac transplantation have a 5-year survival of approximately 50-60% as a group. However, it is becoming clear that there are higher risk subsets where 5 year survival is lower (including those with lower birth weight (this is why we are concerned with Ella's low weight), additional congenital anomalies, a genetic syndrome or those with a highly restrictive atrial septum.Further, studies show that about 50% of those children who survived surgery in the early development of staged reconstruction have developmental delay or need special education; about 25% of these surgical survivors have severe disabilities.
http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome
I am posting this so you know what the family is facing. You are welcome to visit wikipedia and read more about it, but at least this will give you an idea.
Emily will be delivering this week. She has a c-section scheduled for Sunday, Sept. 4, but she may be delivered earlier. I will be sure to update this blog more often this week to keep everyone as up to date as possible.
Thank you so much for your love and prayers. They really do mean so much to the Hawkes family.
Love,
- maria ouellette
On behalf of Emily, Christopher, Aiden and Ella
Also, if you would like to make a donation to the Hawkes family, it would be greatly appreciated. They have lots of medical bills coming up and hopefully some travel. I am not sure if I explained thoroughly before, but if Ella is strong enough to survive birth and is eligible for heart surgery, they will have to travel to Palo Alto, CA for at least 3 weeks at a time 3 times in her first year of life. If she is not a candidate for the surgery, there are lots of other expenses having to do with hospice that they are approaching. Any donation you can make would be greatly appreciated. There are 50 of us, if each of us makes a $5 donation, then they will have their hotel paid for during their visit to CA. If you can, I know it will be appreciated.
We love you and our hearts are with you on this journey.
ReplyDelete- McCoard Family