Sean

Sean was born on June 20, 1994 in Austin, Texas. He weighed 9 pounds, 7 ounces and was 21 inches long. Within 30 minutes of his birth the doctors knew there was something wrong with him. He was put in neonatal ICU and they ran some tests. His pediatric cardiologist is Dr. Finnegan. His surgeon is Dr. Dewan. What they discovered was that he had a heart murmur. He was cianotic and the doctors decided to move him to Brackenridge Children's Hospital, one of the finest heart hospitals in the south. At three days of age he had a heart catheterization.

Sean was diagnosed withPulmonary Valve Atresia. The valve on the pulmonic side had not developled. The chamber of his heart was drastically underdeveloped because the valve was missing. There was very little oxygen getting to his lungs, therefore the blue tint to his skin, lips and fingernails. His blood/oxygen level hovered around 60%...most normal people are at 90% or more.

At five days of age they went in and opened the hole between the two chambers of his heart rationalizing that some blood exchange was better than none. It didn't seem to help his blood/oxygen level, but the doctors felt he needed this surgery to survive. He spent his first month of life in the Pediatric ICU. A thousand thanks to his ICU nurses...

When we took him home, there were no guarantees. Dr. Finnigan even admitted he had some nightmares about his survival. He had lost a great deal of weight in the hospital and he only began gaining at home slowly. He was a quiet baby. I tried nursing, but he had been in the hospital so long, and the conditions were not right for us, so he started life on Similac provided by the Travis County WIC office. I want to thank them for all of their support and for the breast pump they provided while Sean was in the hospital and the fans for him when we cme home.

Sean didn't really thrive after his first surgery and at the age of 9 months the doctors decided it was time for another surgery. They took him back into surgery in May of 1994. This time they made the hole in his heart smaller, and "reamed" out the smaller chamber of the heart. The aim is to have both chambers as close to the same size as possible to guarantee a more even heart rhythm. For his entire life he has been on Digoxin/Lanoxin to strengthen and stabilize his heartbeat. This second surgery was only moderately successful. It didn't really raise his blood/oxygen level, which was discouraging. Because of this Dr. Dewan decided to totally close the hole in the heart wall while he was still in ICU. It was a simple procedure because they had left a stitch in the heart with the threads outside of the incision on the off chance that he would need the hole closed. After this final procedure his blood/oxygen level hit 90% and for the first time in his life he was a healthy pink baby! Unfortunately he isn't finished with surgery yet.

All of his check-ups had been very optimistic and hopeful that he would continue to improve and grow. We had no idea that there was any chance that he wouldn't make it...until his last check-up. At this check-up it was decided that the smaller chamber of the heart isn't catching up in size to the larger (normal) side. Because of this he has basically two heart rhythms. If he were not on his heart medication, it would be the perfect imbalance that causes heart attack.

Sean has another appointment on the 16^th of September. Here we will discuss his next surgery. One of the ventricles leading to the heart is narrowing for the second time and they want to put a plastic piece in there to hold it open. We will also be discussing a relatively new procedure that we are considering. You see children with Sean's disorder have a 50% chance of dying by age 5 and the records showing children with this disorder living even to 18 is rare. So our goal is to give Sean the best chance of living a long and healthy (healthy being top priority) life. And this procedure could give him this chance. The procedure involves going into the larger (normal) side of the heart and cutting out a section, making it the same size as the smaller chamber. The theory is that since the sides have been growing at the same rate since birth, if we can equal the size of the sides, they will continue to grow at the same rate, staying equally sized. This would give him the chance he needs to reach puberty at which time they will put in an artificial valve to replace the one he was born without. It depends on the decision of the doctors.

Sean loves books, animals, video games and life in general. His favorite cartoons are Pokemon and Dragonball Z. He is a loving, smiling, hugging, happy child who brings joy into the lives of all who meet him.

Sean had his check-up on the 16^th. It was an EXTREMELY GOOD check-up. He is doing VERY WELL. His doctor said he can play kick-ball, basketball, baseball and soccer, just no football, at least till we get him to junior high age when they will put in the missing heart valve. They encouraged any cardiovascular exercise for the worst thing for him would be to become at all overweight. He also said that barring any unforseen complications, Sean will be allowed to go to regular school with regular children, something he had never said before. We are thrilled and happy and grateful after this appointment!!! Praise the Lord!!!

Sean had another appointment in February 2000. The valve that he DOES have is pretty leaky. And there is a leak in the sidewall of the heart. However, Dr. Finnigan still remains optomistic that Sean will stay stable till we can "grow him his own heart valve" as Dr. Finnigan said. The technology is that they grow a blank valve and inject it with your DNA, and it LITERALLY becomes YOUR heart valve, keeping the heart from rejecting it. Isn't technology miraculous?

Sean is in First Grade this year and loves it. His teachers are Ms. Hansen and Mrs. Spivey and they are wonderful with him. He loves the children and the work (except writing). He is being tested for dysgraphia which is a writing disability. Hopefully this will allow him to have the tools he needs to learn to write better and to be able to do his work more efficiently.

My Favorite Links

Angelfire - Easiest Free Home Pages

The M&M Factory

Disney, the website for families

Nickelodean - a fun place for kids

Reading Rainbow from PBS

Pooh Place, for Winnie and friends

The Weekley Reader Gallery

Read my Dreambook Sign my Dreambook!

 

This Animaniacs Ring Site is owned by
Sean Masters.
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