Nationally, the incidence of Heart Defects is 1 out of every 125 newborns. But in the state of Wisconsin, the rate is 1 out of every 74 newborns. Why? That’s what everyone wants to know, that’s why the Wisconsin Pediatric Cardiac Registry has been created. Click here to go to their website, and here to see some preliminary results. Maddy is a part of this registry. While she was still in the hospital I filled out the huge packet of paper work. They asked everything ranging from what type of cleaning products you use to the type of industry you work in or live near. They took blood samples from Maddy (before any transfusions), samples of her meconium, and DNA. Also DNA & blood from, Tony, Tristyn & I. I hope that in some small way the information we gave them will help answer some questions.
The national incidence for her particular defect (TGA) is about 2-3 in every 10,000 live births. The most common heart defect is ventricular septal defect (VSD), a hole in the wall dividing the left and right ventricles of the heart. I wonder what the statistics are for these in Wisconsin?
On a side note, Maddy and Tristyn both got their MedicAlert bracelets about 2 weeks ago. I don’t anticipate anything happening with Madilyn’s heart, but once you’re a heart mom you’re always a heart mom. She does have scar tissue where her aorta and pulmonary arteries were reattached, which could create a weak spot, and in an accident you just never know what could happen. As for Tristyn, she doesn’t have any medical conditions, but in an emergency she may have difficulty communicating.
.
Showing posts with label congenital heart defect. Show all posts
Showing posts with label congenital heart defect. Show all posts
Monday, April 12, 2010
Monday, October 27, 2008
May 1st 2008 - Mayday
A few days ago I was watching the video tape of Maddy birthday. My mind was kind of fuzzy right after she was born and I didn't know exactly what happened in the minutes after birth until I watched the video. The video starts right after she was born. She is laying on my chest and the nurses are rubbing her vigorously trying to get her to cry. After about a minute they take her over to the incubator and are working on her. I hear little tiny cries coming from her, and one of the nurses repeating "come on baby, breath! Stay with us baby! Come on! Come on!" When Tony goes over to get a picture of her the nurse sternly says "You will need to stop taking pictures NOW" the video goes instantly blank. I felt my own heart skip a few beats while watching this. I though to myself that it was like watching a sad movie because that is how the nurses talk in the movies when a baby is in trouble. Thankfully I know this movie has a happy ending!
The video picks up again the next day at Childrens hospital in the NICU. We did alot of taping in the hospital, I wanted to have a good record of everything so Maddy would know her birth story, and with everything happening so fast I didn't trust my memory. We have done alot of video and pictures since we got home, every first has been recorded, just as it was for Tristyn when she was born.
The video picks up again the next day at Childrens hospital in the NICU. We did alot of taping in the hospital, I wanted to have a good record of everything so Maddy would know her birth story, and with everything happening so fast I didn't trust my memory. We have done alot of video and pictures since we got home, every first has been recorded, just as it was for Tristyn when she was born.
Monday, October 13, 2008
Poem
For all who see her
faded line,
I look to them and smile.
You see, my child is
loved so much,
I would face ANY trial.
That scar I trace with
my finger,
It's the door to her
beautiful HEART!
God must have known how
much we'd love her,
Just as He loved her from
the start!
faded line,
I look to them and smile.
You see, my child is
loved so much,
I would face ANY trial.
That scar I trace with
my finger,
It's the door to her
beautiful HEART!
God must have known how
much we'd love her,
Just as He loved her from
the start!
Do you have a favorite poem? Please share!
Monday, October 6, 2008
All about Madilyn
Madilyn Ann Carpenter was born at 10:40pm on Thursday, May 1st, 2008. Within a few minutes we knew something was wrong. She was very blue and her breathing & cries were very shallow. I remember the nurse asking my husband to stop taking pictures. I watched the nurses working on her, and over heard one say “Come on baby, stay with us”, it was like watching a bad movie. She was taken to the nursery to have a bunch of tests and we were given the preliminary diagnosis of a congenital heart defect. She would need further tests to find out the extent of her heart defect. At this point we were very scared and all we could do was pray. I had an ultrasound around the 20th week of pregnancy and was told everything looked fine, so all of this came as a sudden shock to us.
Maddy was taken by the Spirit of Marshfield ambulance to St. Joseph’s in Marshfield, she arrived here around 4:00am. Tony left and met Maddy in Marshfield, I wasn’t able to leave the hospital yet, so I had wait. Before she left, the nurses gave us some Polaroid pictures they had taken. I later learned that these are called “just in-case pictures”. In Marshfield she saw Dr. Dyke, he did several tests, ultrasound, echo, etc. and she was officially diagnosed with Transposition of the Great Arteries (TGA).
In a normal heart, oxygen-depleted "blue" blood is pumped from the right side of the heart, through the pulmonary artery, to the lungs where it is oxygenated. The oxygen-rich "red" blood then returns to the left heart, via the pulmonary veins, and is pumped through the aorta to the rest of the body. With TGA, blue blood from the right heart is pumped immediately through the aorta and circulated to the body and the heart itself, bypassing the lungs altogether, while the left heart pumps red blood continuously back into the lungs through the pulmonary artery. In effect, two separate circulatory systems are created. Maddy was born with "Simple" TGA, meaning TGA was the only heart defect. Although it may seem illogical, babies born with "Complex" TGA have a better chance of survival. This is because with they have other defects such as a ASD, VSD (holes in the heart) which allow for mixing of the blood. Maddy did not have this advantage, she had no mixing of the blood and her PDA was very small. Therefore she needed an emergency stent (hole) put in her heart, just to survive long enough to have the surgery to correct her TGA.
A few hours later she was then taken to Children’s Hospital in Milwaukee. The doctors really wanted to air lift her there, but the weather was just too foggy. She arrived in Milwaukee around 9:30am on May 2nd. She immediately had a Balloon Atrial Septostomy, and Dr. Berger put a stent in her heart, she was about 11 hours old at this point. A stent is a man-made hole between the chambers, this allowed her blood to mix. This stabilized her and we were able to wait a few days and let her gain some strength before surgery. This is where I was finally able to catch up with her again. I was discharged from the hospital and we made the 3.5 hr. drive to Milwaukee, not very comfortable only 10 hrs after giving birth! We arrived shortly after her stent was put in. We were later told that the ambulance ride was very tough on her, she coded twice and the attendants were afraid she wasn’t going to make it. The stent made a world of difference, the next time we saw her she was nice and pink. The day after the stent was put in she had an episode of apnea, where she stopped breathing. I have never heard so many alarms and seen so many nurses come running. They determined that this was a side effect of one of the drugs she was on. To keep this from happening again she needed to be put on a CPAP machine. This stands for continuous positive airway pressure. This is a small device that fits over her nose & was held in place by a fabric, helmet like, harness.
On Monday May 5th Dr. Tweddell preformed the Arterial Switch Surgery (Jatene procedure) and put the arteries back where they should be, she was 4 days old. It was a long surgery, almost 7 hours, but she came through with flying colors. She recovered very quickly and on May 13, at 12 days old, Maddy was able to come home.
Maddy is now a happy and healthy 8 month old who just celebrated her first Thanksgiving and Christmas. She will need life long cardiac care to watch for leaky valves, narrowing arteries at the re-connection sites, and irregular heart beats, but her outlook is great thanks to the wonderful care she received. Tristyn is 4 years old & loves her little sister, the first thing she said was “Mad-o-lin is shiny and new”. Poor Tristyn was a trooper during all of this. She had no idea why she was suddenly abandoned at her grandparents house for almost 2 weeks. She was able to come & visit us once and that was wonderful, because I really missed her. Maddy and her sister Tristyn are both precious blessings from our Lord Jesus. Our family has been blessed with two beautiful daughters and we treasure each day.
.
Maddy was taken by the Spirit of Marshfield ambulance to St. Joseph’s in Marshfield, she arrived here around 4:00am. Tony left and met Maddy in Marshfield, I wasn’t able to leave the hospital yet, so I had wait. Before she left, the nurses gave us some Polaroid pictures they had taken. I later learned that these are called “just in-case pictures”. In Marshfield she saw Dr. Dyke, he did several tests, ultrasound, echo, etc. and she was officially diagnosed with Transposition of the Great Arteries (TGA).
In a normal heart, oxygen-depleted "blue" blood is pumped from the right side of the heart, through the pulmonary artery, to the lungs where it is oxygenated. The oxygen-rich "red" blood then returns to the left heart, via the pulmonary veins, and is pumped through the aorta to the rest of the body. With TGA, blue blood from the right heart is pumped immediately through the aorta and circulated to the body and the heart itself, bypassing the lungs altogether, while the left heart pumps red blood continuously back into the lungs through the pulmonary artery. In effect, two separate circulatory systems are created. Maddy was born with "Simple" TGA, meaning TGA was the only heart defect. Although it may seem illogical, babies born with "Complex" TGA have a better chance of survival. This is because with they have other defects such as a ASD, VSD (holes in the heart) which allow for mixing of the blood. Maddy did not have this advantage, she had no mixing of the blood and her PDA was very small. Therefore she needed an emergency stent (hole) put in her heart, just to survive long enough to have the surgery to correct her TGA.
A few hours later she was then taken to Children’s Hospital in Milwaukee. The doctors really wanted to air lift her there, but the weather was just too foggy. She arrived in Milwaukee around 9:30am on May 2nd. She immediately had a Balloon Atrial Septostomy, and Dr. Berger put a stent in her heart, she was about 11 hours old at this point. A stent is a man-made hole between the chambers, this allowed her blood to mix. This stabilized her and we were able to wait a few days and let her gain some strength before surgery. This is where I was finally able to catch up with her again. I was discharged from the hospital and we made the 3.5 hr. drive to Milwaukee, not very comfortable only 10 hrs after giving birth! We arrived shortly after her stent was put in. We were later told that the ambulance ride was very tough on her, she coded twice and the attendants were afraid she wasn’t going to make it. The stent made a world of difference, the next time we saw her she was nice and pink. The day after the stent was put in she had an episode of apnea, where she stopped breathing. I have never heard so many alarms and seen so many nurses come running. They determined that this was a side effect of one of the drugs she was on. To keep this from happening again she needed to be put on a CPAP machine. This stands for continuous positive airway pressure. This is a small device that fits over her nose & was held in place by a fabric, helmet like, harness.
On Monday May 5th Dr. Tweddell preformed the Arterial Switch Surgery (Jatene procedure) and put the arteries back where they should be, she was 4 days old. It was a long surgery, almost 7 hours, but she came through with flying colors. She recovered very quickly and on May 13, at 12 days old, Maddy was able to come home.
Maddy is now a happy and healthy 8 month old who just celebrated her first Thanksgiving and Christmas. She will need life long cardiac care to watch for leaky valves, narrowing arteries at the re-connection sites, and irregular heart beats, but her outlook is great thanks to the wonderful care she received. Tristyn is 4 years old & loves her little sister, the first thing she said was “Mad-o-lin is shiny and new”. Poor Tristyn was a trooper during all of this. She had no idea why she was suddenly abandoned at her grandparents house for almost 2 weeks. She was able to come & visit us once and that was wonderful, because I really missed her. Maddy and her sister Tristyn are both precious blessings from our Lord Jesus. Our family has been blessed with two beautiful daughters and we treasure each day.
.
Subscribe to:
Posts (Atom)