Written before Robin's death, for people who were eagerly awaiting her birth.
THE ROBIN ELIZABETH MARSH FAQ
[Frequently Asked Questions]
Ok, it is a little late. I've got a good excuse. Sorry it is a form letter, but it should get you up to date and help answer any questions you might have from any rumors.
Robin was born on July 6, 1997 at 1:16 p.m. (Sunday afternoon). Six pounds, five ounces, nineteen and a half inches long. She looked great. Just like her sisters. Win's Mom (Joyce Wallace) had flown into town to help out, and everyone was on top of the world.
They were ready to let us go home, but our pediatrician decided to run just a couple more tests. Ten percent of newborns have a pda (its a medical term, you will need to ask someone else what it means), but the doctor decided to run some tests anyway. As they started to come back normal, he left and Win got ready to leave.
Then, they told her that she could see Robin in the nursery any time she wanted. They paged me (but I had gone home to cook lunch for everyone). They found me just in time to see Win and help her pack up for an emergency flight to Dallas Children's Hospital.
On Friday, July 11, 1997, Robin had open heart surgery (the Norwood Procedure). I had to return to Wichita Falls (I got in at 1:00 a.m. July 14th to prepare for a federal court hearing a client wanted me not to miss).
On Tuesday, July 15, 1997 they did the second half of the operation. I got out of Court and was informed that everything went ok. I've had better days in Court, but I've had a lot worse.
Robin will have another surgery in three to six months and a final surgery in twelve to twenty-four months.
Question: how dangerous are the future surgeries? Well, for open heart surgery they are pretty safe. A 95% survival rate on each of them. The surgery Robin just went through is the dangerous one. This year it had been performed five times at Children's and they had two survivors prior to Robin's surgery.
Question: who did you name the baby after? One of our dearest friends has a middle name of Robin. One of Win's favorite professors has a first name of Robin. One of the kids at karate is named Robin and so was the baby's nurse. We know several significant Elizabeths too. Win picked the name out after dreaming about a little baby girl named Robin.
Question: do you have any needs? Your prayers are very appreciated. Luckily we have family (Steve's sister flew in, Win's mother was hear) dear friends who we consider family (and who had just moved to the Dallas area with a spare bedroom), and all the help we can use. More even. This time we even have great insurance. We've had some dear, dear people help us when we needed it (from Vickie Crihfield who is dearly appreciated to Kathy Warnock who drove down with us to Jim Craig and family who went more than the extra mile to and endless list of people we would name if we weren't afraid of embarrassing them, including Syma Robin Prince).
Question: how serious is Robin's condition? If everything goes well, they've told us that we need to adjust to the fact that Robin will probably not be able to play football, especially pro football, though she can play tennis and other Norwood children have had children of their own (the doctors weren't too happy about it, but then the procedure is pretty new so those children having children were much too young, Norwood or not).
Question: how is Heather doing? Very well, thank you. Win is doing well (we've had a lot of friends drop by at just the right moment). We are taking turns with her and Robin so that Heather can come back up to Wichita Falls and get back to a more normal life.
Question: will Robin's children have this problem? Probably not. The condition is not genetic and has no known risk factors (other than boys are about 66% of the people who have the problem).
To be honest, it was a real shock. The Norwood Procedure is pretty new and done only in the U.S. While they started efforts towards the Norwood about 1972, as late as 1991 articles and books were being published that concluded that there was no effective treatment for Robin's condition. The oldest of the "Norwood children" are about fifteen or sixteen, and most are under twelve years of age.
On the other hand, the Dallas surgical team (1997 aside -- it has been a rough year for them) does about 10 or so a year and has a 70% success rate through the end of the first surgical set. They lose about another 10% (5% each time) on the two follow-up surgeries (the "hemi-Fontan" and the "Fontan").
But we are well and God has blessed us very much in a new daughter, such good friends and a loving community. May He bless you also.
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