image shows a normal heart vs one with d-trans, VSD and pulm. stenosis. Also shows Rastelli and performance.

Originally used for the repair of d-trans of the great vessels w/ VSD and pulmonary stenosis, the Rastelli Procedure (named after Giancarlo Rastelli, Italian physician and cardiac researcher) is now used to repair most, if not all, cyanotic heart defects, or congenital heart defects causing a lack of oxygen-rich blood in the body, resulting in a bluish tint in the child especially the nail beds and mouth. This repair is done between the child’s first and second birthday, in order to maintain oxygen levels, a palliative Blalock Taussig shunt is given to the child.

The Rastelli is a major open heart operation, the patient is placed on cardiopulmonary bypass and the aorta is clamped. The surgeon will close the VSD (Ventricle Septal Defect) by way of a Darcon patch of sorts which will also redirect blood flow of the aorta. Then, the pulmonary artery is surgically disconnected and valved conduit is created using fabric, tissue from a cadaver, or the patient’s pericardium. This valved conduit is then used to attach the ventricle to the artery, the valve will open and close in time with the heartbeat allowing blood flow in one direction at a time. The procedure is extensive, lasting upwards of 9 hours.

Other repairs that can be made, if necessary are the removal of muscle tissue from the right ventricle that is either enlarged or obstructive to blood flow and the surgical closing of the pulmonic valve, should it be damaged.

Postoperative care in an uncomplicated case will last around 2 weeks. The valved conduit does not grow with the child, and periodic surgeries to replace this device will be necessary.

This is the operation that my son, Ronnie, is facing within a year.  If you, or anyone you know, has personal experience with this operation, I would like to hear from you.  I have heard from two others about how their child did following the Rastelli, I would like to hear from as many as possible.

Ronnie had his Norwood clinic appointment this morning. I had a goal weight in mind for my bouncing 8 month old baby boy, and we fell a bit short, but we were very close. My goal for Ronnie was 14 lbs, and he is 13.75 lbs, or 13 lb 12 oz, he has been stuck in the 13 lb. range since October and I am frustrated. Nonetheless he is gaining weight and I am happy. He is a smidge over 26 inches, so he is growing as well and I am happy.

However, there are other items of note that trump this.

Ronnie is using rolling as a mode of transportation, this has developed in the past two weeks. He is also standing while holding on to my hands (or the hands of someone else, lol). He has been babbling on and off for a couple of months, but in these past few weeks he has started mocking sounds that we make to him, and I am thrilled. When Dr. H saw Ronnie standing he was very pleased, his neurological development is very good for a DiGeorge syndrome baby boy.

Dr. H. thinks that while 25 lbs is the goal weight for the Rastelli procedure, there is a chance that Ronnie’s will be closer to 19 lbs. The trick to the Rastelli is the timing, he needs to wait as long as possible to balance out the positive use of the shunts to aid Ronnie’s development, and his outgrowing the shunts. So, I am sticking to my initial estimate of some time between 18 months and his 2nd birthday.

Still, he is gaining weight so slowly, I worry, but not excessively so as Dr. H. does not seem overly concerned.

I recently learned of a local couple expecting in the spring, and the recently learned their unborn son has CHD. I feel for them, but I feel positively for them, and I am excited to get in contact with them as well as their family to offer any knowledge/experience/support/friendship.

In a recent discussion with another heart mom, she expressed a sentiment that I share, but have been unable to voice for various reasons. As a mother, I wish I could take away all of this and make my child unscathed, but this is what makes my child . . . my child, and to change this is to change them. I agree wholeheartedly. It is what we go through that makes us who we are, our experiences, our tragedies, all of it. I want Ronnie as he is, and I think being able to admit that without guilt has helped me put quite a bit of the past 8 months in perspective.

Why did this happen?
Where do we go from here?
What did I do wrong?
How do I fix it?

I feel like I am coming up with answers. It happened because it happened. We go on living, just in a different way. I did nothing wrong, but I also refuse to do nothing at all. I can’t fix this, but I can advocate and help others along their path, not so that they will feel the same as I, but so they may answer their own questions with a friend to stand beside them. I am encountering so many families who would have forever remained strangers had this never happened, and without even knowing it, these strangers have all had a hand in picking me up, dusting me off and taking me exactly as I am.

I will always grieve for the life I would have, had my son not been a CHDer, but I will never grieve for the life I have, because my son is a CHDer.

This is how an advocate is born