1. You will need your 9 digit zip code to look up your local House Representative. If you do not know it, click here to look it up.
2. To find the email and/or mailing address of the House Representative for your district, click here and enter your 9 digit zip code.
3. Send an email or letter to your local House Representative, asking him/her to support Chloe’s Law – House Bill Number 1604.
4. At the bottom of your email or letter, please include your full name and address, especially the 9 digit zip code, so the House Representative knows that you live in his/her district.

If you need ideas on what to say in your email or letter, here is a sample of what my friend wrote:

Dear Representative XXXXXX,

I have a loved one who was born with a Congenital Heart Defect (CHD) in 2008. Nine hours after Chloe was born, her parents felt there was something wrong with her. They strongly urged the nurses to do more testing on Chloe, even though she scored high on the APGAR tests and was not showing any “classic” signs of illness. A few hours later, the nurses finally did a Pulse Oximetry Screening and discovered that Chloe was born with a rare Congenital Heart Defect. The Pulse Oximetry Screening saved Chloe’s life.

Congenital Heart Defects (CHD) are America’s #1 birth defect. Every 15 minutes, a baby is born with a CHD (American Heart Association). The majority of these baby’s CHDs go undetected during pregnancy (like Chloe’s). Some babies born with a heart defect need oxygen, medication and surgery immediately, so detecting the heart defect before sending them home can save the baby’s life.

Please don’t send a baby home from the hospital too soon. Please support House Bill #1604, Chloe’s Law, which expands the newborn screening requirements in section 191.331 to include Pulse Oximetry Screening prior to discharge of the newborn from the health care facility.

Thank you for being a voice for our community and supporting Chloe’s Law.

FULL NAME
FULL ADDRESS
FULL CITY AND STATE
12345-6789

Kelly Manz, Heart Mom to Chloe

http://chdbabies.blogspot.com

For the first month of her life, Chloe ate fine. Then it went downhill, FAST! This is typical with CHD babies. One of the first signs of a heart defect is poor eating/poor weight gain. It takes so much effort for heart babies to suck, swallow, breathe that it becomes too much for them. That’s why Chloe stopped eating altogether. So our only option was to feed Chloe via the NG tube. After she spent the first two weeks of her life in the NICU, Chloe was re-admitted at one month for failure to thrive. That is when they put in the NG tube. The hospital has a policy that one parent needs to learn how to insert the tube before discharge. My immediate response? Teach my husband. There was no way I was going to do that to my Chloe-cakes! It was hard enough watching the nurses put it in, with Chloe screaming like crazy! And how could I possibly do that while I am sobbing like crazy just watching? So it was time for Chad to learn. I, of course, was very nervous. See, the nurses usually get it in the first time. I was worried about Chloe having to suffer for too long while Chad learned how to do this. Here is how the conversation went:

Me: How many times are you gonna try?
Hubs: As many as it takes.
Me: How many times are you gonna try? (yes, I repeated the question)
Hubs: Twice.
Me: So what if you don’t get it in the first time?
Hubs: I will try again.
Me: And what if the second time doesn’t work?
Hubs: Then the nurse can do it.
Me: How long will you keep trying the second time until you let the nurse do it?
Hubs: I don’t know.

I’m sure you all can relate that when your child is in pain, time stands still. What is really 1 minute feels like 10 minutes. That’s exactly how I felt when my hubby made his first attempt with the NG tube. I, of course, started crying before he started. Just having to hold her head down was so painful for me. Then Chad started and I swear it took him 10 minutes with the first attempt (really 10 seconds). Then he actually started asking the nurse what he did wrong, which is a totally acceptable thing to do, however NOT when Chloe-cakes is freaking out and we are still holding her down! So after his ten minute discussion with the nurse (really 10 seconds), he tried again. He was still having trouble and after 10 minutes of him trying again (really 10 seconds), I started screaming at the nurse “OKAY! HE SAID HE’D ONLY TRY TWICE! YOU CAN DO IT NOW! DO IT NOW!”

And that was our first experience with the NG tube. We left the hospital without “proving” we could put in the NG tube, but my salesman of a husband convinced the nurses he could do it at home. And he was right. A week after we got home, Chloe pulled it out and Chad put it back in on the first try. And every other time she pulled it out or threw it up, Chad got it in on the first try. We became a team. I would swaddle Chloe so her arms weren’t flailing everywhere, I would have the tape ready and hold her head. We worked well together. And since my hubby travels and is gone alot, I had to suck it up and learn how to do it. You know what? I got it in on the first try! You know why? Because we do what we have to do for our kids, no matter how painful it is to us.

http://chdbabies.blogspot.com

Hearts of Hope – An Infant’s Heart is Healed with Hope

Winner of the Best Student Documentary at the Illinois International Film Festival, 2009

Michel Ilbawi, M.D., leads the pediatric heart surgical team at The Heart Institute for Children. Headquartered at Hope Children’s Hospital in Oak Lawn, Illinois, they perform over 400 operations and care for more than 3,500 children with heart defects each year. With over 25 years experience as a pediatric heart surgeon and more than 20,000 surgeries performed, Dr. Ilbawi is nothing short of a miracle-worker to the families whose children he treats daily.

The documentary film, Hearts of Hope, is a once-in-a-lifetime, behind the scenes look at this amazing doctor, his dedicated staff and the families of children they fight to save everyday. In the delicate realm of pediatric heart surgery, sometimes hope is all you have. Hearts of Hope unveils a world of courage, strength and the spirit to survive, at any age.

To read more about the movie, click here. To see a trailer of the movie, click here.

Upcoming screenings:

2:00 PM, Saturday, February 6th
Mount Oxford Room, The Children’s Hospital
3123 East 16th Avenue; Aurora, CO

7:00 PM, Monday, February 8th
The Lyric Cinema
300 East Mountain Avenue, Fort Collins, CO
The run time of the film plus a short video from Hypoplastic Right Hearts is approximately 75 minutes. 
FREE for ALL, but donations are always welcome!

1. Do you see 4 heart chambers? Are all 4 the same size?
2. Do you look at the arteries or outflow tracks as part of your scan? *Note: It is extremely important to focus on “artery views”. CHDs are often missed if only a standard “chamber view” is performed.
3. Are the heart and stomach in correct positions? *Note: Both organs should lie on the left side of the fetus.
4. Is the heart function normal? Does the muscle work normally? Is everything hooked up correctly?
5. Is the heart rate normal? Is the heart rate irregular? *Note: A normal heart rate range for a fetus is 120-180 beats per minute. Too slow is less than 100 beats per minute and too fast is over 200 beats per minute. 

1. Do I have any first degree relatives who were born with a congenital heart defect (CHD)?
2. Do I have Diabetes Mellitus or Lupus? Theses are two conditions that can be associated with congenital heart issues.
3. Has the doctor or nurse midwife heard an irregular fetal heart rate on more than one visit?
4. Does my fetus have a chromosome abnormality that is associated with a CHD?
5. Does my fetus have Hydrops Fetalis (fluid collection in the fetus) or an organ problem, such as Diaphragmatic Hernia, Omphalocele or a lung mass that can be associated with a CHD or congestive heart failure?

After birth, there is a test called a Pulse Oximetry Screening. It is a noninvasive screening of the oxygen levels in the baby’s blood. This test has been successful in finding many CHDs or other respiratory issues before the baby goes home with undetected issues.

The test is fast, inexpensive and painless. Please ask the hospital to screen your baby before leaving the hospital, preferrably on the day of discharge.

http://chdbabies.blogspot.com

Heart defects come in all types, from minor to major. Defects can occur inside the heart or in the large blood vessels outside the heart. The heart defect may need immediate surgery or may be able to safely wait for months or years. In most cases, the timing of the surgery will depend on how sick the baby is.

The heart defect may be repaired in a single surgical procedure or may require a series of procedures. Surgery may involve opening the heart to repair defects or repairing defects of the blood vessels.

The type and timing of surgical repair depends on the child’s condition and the type and severity of heart defects. In general, symptoms that indicate that surgery is needed include the following:

• Blue or gray skin, lips, and nail beds (cyanosis), meaning there is not enough oxygen in the blood (hypoxia)
• Difficulty breathing because the lungs are “wet,” congested, or fluid-filled (congestive heart failure)
• Problems with heart rate or rhythm (arrhythmias)
• Excessive workload on heart that interferes with breathing, feeding, or sleeping
• Poor weight gain and difficulty feeding (taking too long for your child to eat, not eating at all)

You’ve been told your baby needs open heart surgery. Knowing what to expect before and after your baby’s operation will make the experience easier for the whole family.

Chances are your newborn is in the intensive care unit, or NICU. This is also where most of your infant’s pre- and post-operative care will take place. To reduce the risk of infection, hospitals often restrict visitation to parents only. You should wash your hands before holding your baby, and avoid close contact if you are sick. An older child will likely be taken care of in a pediatric intensive care unit (PICU) after surgery.

Many parents say the hardest part is saying goodbye to their babies as they are wheeled off to surgery. Feelings of fear, sadness and guilt are common. Talking to a nurse or social worker about these emotions can help you deal with all the stress and anxiety.

In the operating room -
During open heart surgery, an incision may be made through the breastbone (sternum) and between the lungs (mediastinum) while the child is under general anesthesia. For some heart defect repairs, the incision is made on the side of the chest, between the ribs (thoracotomy) instead of through the breastbone (sternotomy).

It is sometimes necessary to use tubes to re-route the blood through a special pump (heart-lung bypass machine) that adds oxygen to the blood and keeps it warm and moving through the rest of the body while the repair is being done. This machine does the work of the heart and lungs during the operation.

Heart surgery for children requires a specialized team of health care providers:

* Pediatric heart (cardiovascular) surgeons
* Pediatric anesthesiologists
* Pediatric heart-lung (cardiopulmonary) bypass pump technologists
* Pediatric surgical nurses and technicians
* Pediatric intensive care physicians and nurses

Heart surgery requires intensive and extensive monitoring, treatment and coordination by the entire team. Heart surgery for children may take as many as 12 hours in the operating room.

Recovery -
After heart surgery, the child will be moved to the neonatal or pediatric intensive care unit (NICU/PICU) to be constantly and closely monitored and treated for several days. When you are reunited with your child, the tubes and equipment you’ll see around your child’s body can look scary. Your baby may still have IV lines in place for fluids and medications, be on a ventilator to help with breathing and have chest tubes to drain blood and fluid. Some babies may need extra oxygen, which is given under a clear plastic tent. During this time, your child may have the following:

• An Endotracheal Tube is usually inserted through the mouth, into the windpipe or trachea, to provide an airway. It will be taped over the child’s nose and mouth.
• Your child will also be on a respirator to help with breathing. This is a mechanical device that ventilates the child by providing air to and from the lungs while removing carbon dioxide from the body. Your child will be kept sleeping (sedated) while on the respirator.
• One or more Central IV lines placed in a vein that leads to the right atrium. Their purpose is to monitor central heart pressures and give fluids and medications.
• An Arterial Line, which is a small tube in an artery (one of the vessels that pulsate) to measure the blood pressure and oxygen levels.
• One or two Chest Tubes which are placed into the space between the chest wall and the lung, called Pleural Space. These are placed after heart surgery to prevent accumulation of body fluids. The chest tubes drain air, blood, and fluid from the chest cavity. This drainage should diminish in amount daily.
• A Nasogastric Tube (NG tube) to empty the stomach and give medications and/or feedings for several days.
• A Foley Catheter, which is a tube placed in the bladder to drain and measure the urine for several days. It is held in place by a small balloon, which is inflated in the bladder after insertion.
• Oxygen may be needed after surgery. It can be delivered by room air, through the ET Tube, through a mask or through a tube called a nasal cannula.
• Your child will be monitored with a Pulse Oximeter. It is a noninvasive sensor that is clipped to yourchild’s finger, ear or toe to monitor blood oxygen levels.
• There will also be other heart monitoring equipment near the bedside in the room. Leads will be placed on your child’s chest to monitor heart rythmn, heart rate, respiratory rate and any central line pressure readings.

Your child may also have pacemaker wires in the chest in case a pacemaker is needed to regulate heartbeat and rhythm.

Your baby will be sedated and sleepy for a while after surgery. The length of the hospital stay will depend on what type of surgery was performed and how quickly your baby recovers. It may take a few days or a few weeks.

Going home -

When your baby can go home, you’ll have to be careful to avoid exposure to illness. That means you may need to stay inside the house for a while with limited amount of visitors. Your baby may also have to take many medicines at different times of day. A chart with a dosing schedule can help you keep track. The doctors will provide other instructions on how to care for your baby, like keeping the incision clean. They’ll also show you the safest way to pick up your infant after surgery.

It’s hard for parents to see their children go through something like surgery, even when it’s so important for their health. Knowing what to expect in advance can make the experience a little easier to bear.

Kelly Manz                                                                              http://chdbabies.blogspot.com                                                                                  Mom to Chloe, 11-04-08,                                                                                          Taussig-Bing (DORV, d-TGA, VSD, ASD)