CHD Awareness Week: HLHS Papa

My husband, Richard Kaiser, in his own words:
My wife Kirstin Westphal has been publishing beautiful posts about our journey with our HLHS heart baby, Olevander.

Olevander is a very special boy. He makes me a very proud Papa. We were devastated when we found out about his condition, HLHS, around his 20th week of gestation. Kirstin and I devoured every piece of information that we could find on our baby's condition. We were quickly up to speed on the condition and treatments, etc., all of which were 'patches' and not cures. There were no proven cures. We looked into a promising hyper-oxygenation therapy in Germany, but because Ole's left ventricle had zero blood flow we were not a good fit for this treatment. We looked into an experimental treatment that had to be performed before the 29th week of gestation that promised to be a possibility to cure some HLHS/HRHS conditions, but once again, because of zero blood flow in Ole's left ventricle, we were not a good fit for this procedure which involved operating on the baby while inside the mother AND with a survival rate of about 5% on the first human trials - not good to say the least. So, powerless, and totally in the hands of God and the doctors that he blessed us with here at CHOA Egleston we proceeded day by day and hour by hour through the next 20 weeks of gestation and the 3 open heart surgeries (2 planned and 1 unplanned to correct a complication) and 2 caths,one of which was touch and go for a while as the doctors worked to preserve Ole's life.

As an engineer, I understood everything and was totally powerless to do anything to help save my son's life. So we prayed, a lot, and lived moment to moment over those first 21 months of Ole's life totally powerless and having no options, but to trust in the Great Physician.

 

There is no cure for HLHS. Only treatments to prolong and preserve the patients life allowing them to survive. Eventually the patients will experience congestive heart failure and have no alternative, except a heart transplant which carries a whole list of issues also and due to rejection is good for maybe around 15 years.

The first patients were treated with the Norwood, Glenn, and Fontan procedures starting in the early 80's. This is the course we're on now, but so much has been learned and improved on since these first babies were saved by these procedures.

God allowed Olevander to be born at a good time. Right at the rise of the field of Regenerative Medicine. I truly believe that by the time Olevander reaches college age, God willing, that Regenerative Medicine has a very good chance of developing a cure for many conditions, including many major heart conditions, by actually synthesizing a heart from the patient's own tissues and maturing it in the laboratory until it is ready to transplant into the patient. This would be an excellent cure as there would be no rejection and the patient would have a new heart made of his own flesh and blood. This technology is amazing, but just since the turn of the 3rd millennium, over the past 15 years, this field has gone from growing replacement ears on the backs of mice, and growing skin grafts in the lab to synthesizing bladders, kidney's, and blood vessels and heart valves to be used in repairing hearts. This field is growing exponentially. In the past year researchers have actually synthesized a human heart that could sustain its own heartbeat! There is still much work to be done, but progress is being made. I'm praying and am so hopeful that in the next 10 or 15 years that this field will be able to cure my son.

God bless.