Saturday, June 17, 2006

Carvella family heart story.

A little history on my family...My mom gave birth to 5 children. I have given birth to 3 children. Out of these 8 children, 3 have been born with the same congenital heart defect.
My brother Mitchell was the first; born on November 22, 1978. My parents went to the hospital with the intentions of bringing another child home to our family. Mitchell was born grayish blue & after examination, it was discovered he had a heart problem. He was transferred to a larger hospital 1 1/2 hours away to undergo heart surgery. Sadly, my brother died on the operating table at 18 hours of age. This was Thanksgiving 1978 -- I was 6; I remember dancing around my grandparents' kitchen excited that I had another brother & the phone rang. It was my dad telling them that the baby died. I collapsed on the kitchen floor and cried. It was 1978 and my parents had 2 other children at home to care for. They didn't know what defect Mitchell was born with. All they knew was it was a heart defect; there was something wrong with his heart.
June 26, 2000 -- my husband and I head to the hospital at 5:30 in the morning for induction. We know as we're walking into the hospital that our lives are about to change; we just have no idea how much. At 8:24pm, our son Cameron is born. He doesn't cry; he lets out a slight gasp. He's not pink; he's gray. They lay him on my chest for 30 seconds before telling us they think he may have aspirated some amniotic fluid since he was in the birth canal so long. Not to worry, they're just going to take him to the NICU and check him out a bit further. My husband follows them. 10:30pm -- my OB comes into my room to tell me there's something wrong with the baby. They're not exactly sure what but they're transporting him to Children's Hospital (which luckily was right across the street). At this point, they're thinking pulmonary hypertension. "He'll be fine." My husband goes to Children's where he asks the doctors if they've looked at his heart. "My wife's brother died from a heart defect." "It's not his heart" they tell him. He comes back to my room at 3 in the morning knowing nothing. The next day, I'm allowed to go to Children's to see Cameron. When we get to the NICU, he has eye patches on and it is dark over his bed. "Mrs. Carvella, don't touch him. Any stimulation could be negative stimulation." What?!? You don't know what's wrong with my child...He may die and you're telling me NOT to touch him!!! After a full day of uncertainty, I go to sleep that night knowing nothing except my son is getting worse by the minute and no one knows why. Check his heart, my husband keeps saying. No one listens, until the next day when they've completely run out of ideas. We were woke up by a nurse running into my room "Are you the couple with the child at Children's? They need to see you immediately." We literally run through the tunnel connecting the two hospitals, not knowing if our son was alive or dead. We get off the elevator and instead of seeing into the NICU, we see the blinds are closed. Our son is on the other side of those blinds. We see activity -- what is going on?!? We ring the buzzer -- "Someone will be out to see you in a moment". We are ushered to a conference room where there is a chaplain sitting. He's dead and they haven't told us yet. Damn it -- just tell us!! "Mr. & Mrs. Carvella, there is a cardiologist on his way to talk with you." What seemed like an eternity later, we were met by a cardiologist who explained to us that our son was still alive, but barely. He needs to undergo emergency open heart surgery immediately. "We're trying to get the jet from Charlotte to come and take him to Vanderbilt but there's some bad weather holding them up". He hands us a drawing of a normal heart on a paper towel, on the other side he draws Cameron's heart. He has Total Anomalous Pulmonary Venous Return. The doctor is called out of the room while we try to comprehend what we've just been told. Heart defect, open heart surgery, immediately. Dr Liske runs back into the conference room and tells us "We're transporting Cameron to UT hospital where he will have his surgery. They're prepping him for transport now. You can see him for a moment before we go." We get into the NICU where our son is now on a ventilator & there are doctors and nurses rushing around him. A nurse hands me 2 Polaroid pictures and says "These are the last pictures you'll have of your son" I quit listening. I don't hear the rest "without a scar on his chest".
Cameron made it through surgery beautifully! He spent one month in the hospital and came home exactly 4 weeks after his surgery. At his first checkup with the cardiologist after discharge, we were told the doctor that performed Cameron's surgery hadn't done a surgery like that in over 17 years!
Shortly after Cameron turned 2, after A LOT of talking, we decided to try again. Doctor after doctor told us the chances of us having another heart baby were slim to none. Ok, let's try again. In December 2002, we found out we were expecting again. January 2003, we were told that Cameron would need another surgery (and that his cardiologist was transferring to Vanderbilt 3 hours away). He wasn't in any immediate danger so he gave us a choice; summer 2003 or summer 2004. We figured it would be easier while I was 7 months pregnant versus having a 10 month old so, summer of 2003 it was. March 2003, we had the first of 5 fetal echocardiograms done. "If I had to guess, I would say your baby has a 90% chance everything's fine. But let's look again in a few weeks". March 25, 2003 we have our Level 2 ultrasound we're having another boy! The u/s tech sees 4 chambers of the heart (which if you know anything about TAPVR means nothing. It's the pulmonary veins returning to the right place that is the concern). The next day we go back for another fetal echo. There is slightly more concern now. "I can only see 2 of the 4 pulmonary veins. I think the chances of your son having TAPVR may be 90%. In 3 weeks, it went from 90% that he didn't have it to 90% chance he did! "But because we know ahead of time, the outlook is much better. Since you have to come to Vanderbilt to meet with Cameron's surgeon in May, why don't you stop in and I'll do another echo." So in May 2003, we went to Vanderbilt where we not only met Cameron's surgeon & Dr Liske for another fetal echo, but a perinatologist about delivering at Vanderbilt (I can't go into this meeting at this time. I HATE this man and whenever I talk about him, I get sick to my stomach! Long story short, "Your child's heart is fine. Why are you wasting my time?"). This fetal echo showed nothing that the others didn't. Sigh... "Let's check again when you're back for Cameron's surgery". Cameron's 2nd (and last!!) surgery was scheduled for June 12th, exactly 2 weeks before his 3rd birthday. The day before surgery, we had another fetal echo. Dr. Liske called in another cardiologist to look at Mitchell's heart and again, they couldn't see what they wanted to but since TAPVR is difficult, if not impossible to diagnosis in utero, we were told there was a 50-50 chance he had it. Again, since we know, the outlook is much better than if we didn't. We decided to deliver in Knoxville because of our horrible experience with the perinatologist. Oh yeah,Cameron came through the 2nd surgery wonderfully and we were home in 5 days!
August 4, 2003 we head to the hospital for induction. There was my OB, a cardiologist, neonatolgist, and pediatrician ready for delivery. After 3 hours of pushing and failure to progress Mitchell Ryan Carvella was born at 5:22pm via c-section. No scream, no gasp, bluish-gray. He was put to my cheek so I could give him a kiss before they took him away. The next time I saw him, he was in a transporter headed for Children's. The echo revealed that he did have TAPVR, but instead of it being not as bad as Cameron's, like was thought, it was worse much, much worse! Cameron had 4 pulmonary veins which just had to be "rewired" properly. Mitchell only had 2 pulmonary veins and they dead-ended at his diaphragm. He had no chance for survival and died at 13 hours of age on August 5, 2003 at 6:16am. After his autopsy, we met with the pathologist who told us he had never seen a heart so bad. When we had Cameron's surgery follow up a month later, we were told that even had we delivered Mitchell at Vanderbilt in the operating room, he still would have died. His heart was that bad and since he was missing pulmonary veins, well it made it that much worse. Hearing that eased our minds a bit because we were kicking ourselves for not being in Nashville for delivery.
As soon as we found out our 2nd child was a boy, we called my parents and asked their permission to name him Mitchell Ryan after my brother who died. They were thrilled and gave us their blessing. How unbelievable is it that both boys would die from the same defect 25 years apart!
Call us stupid or call us determined but we decided to give it another go! Our miracle, heart healthy rainbow, Carissa Jo was born on September 18, 2004. She is our victory over CHDs and the havoc they've wreaked on our house since 2000. We had one fetal echo done with her and not 30 seconds into it, Dr. Liske said "There's something I've never seen before with your children PULMONARY VEINS!!"

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