Category Archives: Children’s Cardiomyopathy

Children’s Cardiomyopathy Blog. Congenital Heart Disease and Failure, Baby Birth Defects, and CHD Awareness for Infants and Kids. Questions and Answers for Pregnant Moms and Heart Warriors.

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10 Ways to Reduce Fever in CHD Cardiomyopathy Babies

Children's Cardiomyopathy

Babies with congenital heart failure or birth defects can easily get fevers in the hospital. They may show 4 signs or symptoms of a fever. In children with Cardiomyopathy, it may be 1) an accelerated heart rate and trigger tachycardia, 2) high  temperature, 3) sweating, and 4) lots of agitation or irritability. If you notice that your infant shows signs of a fever then address it immediately with a nurse. In my personal experience, when cardiac babies are in distress, they burn calories faster than healthy infants and if untreated, it can lead to more problems.

Is your infant hospitalized or in the intensive care unit? Here are 10 helpful suggestions from trained and experienced nurses on how to treat and reduce a fever in a baby who is diagnosed with Dilated, Hypertrophic or Restrictive Cardiomyopathy:

  • Wrap baby in Pillow cases rather than blankets to reduce body heat. Use non-flannel pillow cases to cover his back or put under his body. Cotton traps heat. Do not layer the sheets. Use lightweight cloth that doesn’t absorb heat.

    baby-frank-zillins-dilated-cardiomyopathy-how-to-reduce-fever
    Wrapping my 3 month old boy in pillow sheets
  • Wrap baby in receiving blankets made from gauze. Do not wrap them in material made from flannel. Do not swaddle since this generates more heat and may cause further sweating.
  • Cooling Blankets and Muslin Blankets. If their fever is extremely high then cooling blankets might be a good solution, otherwise, it may do more harm than good in DCM and HCM babies.
  • Gas check and blood transfusions. As the parent or guardian, you should ask the following question to the cardiologist or cardiology fellow in the ICU: “Can you give my child a gas check to see if they have a low red blood cell count?” If the results indicate a low blood count then ask the RN to do a blood transfusion.  What is this? It’s where the baby receives donor blood. The donor blood comes from a volunteer adult over the age of 18. In most cases the blood is given through an ivy tube. The designated amount or dosage is different for each patient and situation.
  • Turn on air or lower the room temperature. When you’re at the hospital,  ask the LPN or primary caregiver to reduce the heat or turn on the air conditioning in the infant’s room.
  • Do not cover baby with excess clothing, caps, and socks. Keep them naked except for the diaper. Let your son or daughter try to cool their body heat down.
  • Blood cultures test. Ask the nurse the following question: “Can you do a blood culture analysis on my child?” . . . Why is this important to ask?  To check if there is bacterial Infection in their body or an infection caused by the plastic material from the PICC line. An infection may be causing the fever problem.  Blood culture results can take 48 hours. But they can put the baby on antibiotics right away to treat it.
  • Tylenol. The nurse can give a small dosage of this medicine through the feeding tube a few times a day.
  • Turn off Feeds. This applies only to children who have feeding tubes.
  • Sleeping.  Help your newborn relax and go to sleep. Napping will help reduce their heart rate and prevent further agitation.

As a mom or dad, you are your child’s best advocate. Therefore you need to know what to do and what types of questions to ask pediatric doctors, nurses, and fellows. These helpful tips and suggestions were inspired by critical care nurses at Mott Children’s Hospital in Ann Arbor Michigan.

Do you have an idea to add to this article ? Email a heart mom blogger at Skepticalworld@gmail.com

Blog Resources:
CHD Heart Disease: 7 Ways to Help Infants Eat, Poop, and Gain Weight
CHD Awareness: What is Dilated Cardiomyopathy?
I’m Pregnant. Will my Fetus be born with a Heart Defect in Utero?

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Is your Baby Struggling with Weight Gain, Absorbing Feeds and Pooping?

Children's Cardiomyopathy

Babies with a congenital heart disease have a difficult time absorbing food, gaining weight, and pooping. Why? Because their hearts are weaker. Is your baby diagnosed with cardiomyopathy or a heart defect? In Cardiomyopathy infants, the right and left ventricles (lower chambers of the heart) struggle to squeeze enough blood to the rest of the body to help other organs do their job. Their squeezing mechanism has been weakened.

In my personal experience, I’ve observed that Cardiac babies are at a disadvantage for doing things that healthy babies can do. Because of this, if your child is hospitalized in the intensive care unit, please mention the following ideas to nurses, cardiology fellows, and cardiologists. Get educated on CHD and ask lots of questions. Moms and dads are the best advocate for their children!

How can my infant gain weight? Does your baby have slow or poor weight gain?

  • MCT Oil. A cardiology fellow mentioned this to the team. She said it’s very popular in the NICU, even though my son was in the pediatric cardiac unit on a different floor. So the nurses mixed it with his formula. My son received it three times a day, at a dosage of 2 ml.

How can my baby absorb feeds? Unable to absorb nutrients? Does he or she have a feeding tube? Try these 2 suggestions:

  • Alfamino. This is specialized formula. It breaks down food better and is more easily digestible than Pregestimil. This is a great idea if your cardiac baby is unable to digest other types of formula or breast milk properly.
  • Feeds in the intestines. Is the newborn having a hard time absorbing feeds in the stomach?  They can put the feeding tube into the intestinal area and bypass the stomach. This worked for my son and he finally gained weight!
  • Feeds in the stomach: Is the baby on a breathing ventilator and feeding tube? If NO, then here is a great alternative: Nursing. It is often easier and less stressful for them than bottle feeding. Babies burn less calories when they nurse. This also creates a special bond between mother and child.

My baby is having a hard time pooping. What can I do? When your son or daughter tries to poop, do they get agitated? Does their high heart rate increase, do they have ventricular tachycardia? Here are 5 tips that helped my 8 week old boy:

  • Lay them on their stomach. This can help relieve air in the belly and move bowels around. Is your child using a breathing ventilator? No problem. It takes 2-3 nurses to position the child but it can be done! In my experience, this helped a lot for my 10 week old son.
  • Prune Juice or Pear Juice. An experienced nurse suggested this alternative to the doctors instead of adding more fluid  into my son’s body. He received a dosage of 5 ml twice a day, mixed in with his formula.
  • Rectal Suppository Pills. Nurses can insert this small transparent-looking pill into the baby’s rectum. Within a few hours (or minutes), he or she should be able to poop because this pill stimulates the area.
  • Snugapuppy. If you do a Google search on this word, you’ll find a stuffed animal that vibrates (Fisher-Price). If you place the doll on your child, it can help do the following: soothe them and prevent agitation, reduce heart rate, help them sleep and most importantly – stimulate the body to get bowel movements moving down the gastrointestinal tract.
  • Bicycle movements and leg exercise. Physical and Occupational Therapists at the hospital mentioned this idea to me to help relieve gas pain in newborns.  It’s rapid leg pedaling or bicycling.

skeptical-world-cardiomyopathy-congenital-heart-defect-baby-frank-zillins-10-weeksFYI even if your child has a breathing ventilator tube in their mouth, they can still do many of these things!

These ideas above have been inspired by parents, RN’s and nurses in the PCTU Pediatric CardioThoracic Unit at C.S. Mott Children’s Hospital in Ann Arbor Michigan.

Click here to read about 2 symptoms during pregnancy that may indicate your fetus has a heart birth condition.

Do you have any creative suggestions to add? Email a heart mom at skepticalworld@gmail.com

What is Dilated Cardiomyopathy in Babies?

Children's Cardiomyopathy

Congenital heart disease (CHD) is the number one birth defect in babies, 1 in 100 infants are affected. Pregnant? Whether this is your first pregnancy, second, or third, it’s always possible that your child can be diagnosed with a heart defect. Pediatric Cardiomyopathy is considered one of the many forms of heart failure. It’s rare and abnormal. However, it can happen. If your infant is born with the disease, unfortunately, there is NO guarantee that it’s viral or genetic. Why? Because cardiologists and researchers have not been able to exactly pinpoint and identify the gene groups or variants of genes that causes cardiomyopathy (according to the Genetics Counselor at C.S. Mott Children’s Hospital).

What is “Cardiomyopathy”? When you break it down, ‘cardio’ means heart and ‘myopathy’ is damaged muscle. So the definition can be translated as ‘weak, heart muscle.’

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This heart condition also explains the  word ‘myocardium’ which is the muscular tissue or layer surrounding the heart. What is the function of the myocardium? To squeeze blood out of the heart. When the myocardium layer is affected and compromised then it causes cardiomyopathy.

In Dilated Cardiomyopathy, the myocardium layer is weak and floppy rather than strong. ‘Dilated’ is defined as enlarged or stretched. So the phrase ‘Dilated Cardiomyopathy’ can be interpreted as ‘enlarged heart with a weak muscle’. There is no known cure to prevent it. The disease also comes in different forms such as mild or severe. In milder forms, the toddler can be treated with medicine like captopril and sent home. In severe cases, the infant may be hospitalized and need a heart transplant. What are 2 signs that the fetus may have a heart condition? As of now though, research is still ongoing and often underfunded.

Are you a mom, parent, or grandparent and need more answers? Talk with a Geneticist at your nearest hospital or you may contact Patricia Arscott at the University of Michigan Medicine and Congenital Heart Center in Ann Arbor MI. She is knowledgeable in this field and can help answer further questions.

Further reading:
Is your baby having a difficult time gaining weight, absorbing food, and pooping?
How do you treat a fever in a baby with Cardiomyopathy: 10 Helpful Tips 
Shop for CHD Awareness T-shirts, Hoodies, Mugs, and Onesie

Pregnant? 2 Signs of Heart Birth Defects in Fetus

Children's Cardiomyopathy

How do you know if your baby has a heart defect while you are pregnant? What are signs of Congenital Heart Disease and Failure in pregnancy? Can it always be detected in utero before birth? No. We can only speculate because ultrasounds cannot detect every birth defect. In my personal experience, this means that you may not know the fetus has a heart condition until delivery. This can be very scary for first time parents and new moms. When I was pregnant, I noticed a few things that seemed out of the ordinary. Although at the time I didn’t realize it, had I known, then I could have addressed it with the OBGYN doctor. Looking back, I’ve realized that there were 2 red flags that my baby was in distressed and something was wrong:

  1. Sudden Weight Gain in 2-3 days that was unexplainable. I suddenly gained 6 pounds in 2-3 days which I could not explain because I’m not an over-excessive eater.  Later on, I’ve realized that this sudden weight gain was due to excess fluid build up in the womb and in my son’s body. He was born with 1.5 pounds of fluid in his body. I’ve learned that with cardiomyopathy, since the heart can’t pump enough blood to the rest of the body, then fluid builds up in the lungs.
  2. Less movement in the womb during my third trimester. Although my baby never stopped moving in my belly, there seemed to be less movement. He was never a wild baby in the womb to begin with though. He passed the kick count every day so I never assumed anything was wrong.

These 2 symptoms occurred during my third trimester. I’ve been told by Pediatric Cardiologists and nurses at Mott Children’s Hospital that most heart birth defects like cardiomyopathy do not develop until the third trimester.

How can you check for a heart defect in your infant? Get a fetal echo. When? Third trimester. Although this test can’t guarantee results, it’s worth checking. Do not expect your local gynecologist to automatically give you this test. You must ask for it. Don’t be surprised if your local OBGYN tries to convince you not to take the test. They may just ‘assume’ and tell you that nothing is wrong with your child.

When talking to other mothers on social media about personal experiences with their own pregnancy, they each had two common factors that correlated with their baby’s heart condition:

  • Less movement of the baby in the belly during the  third trimester
  • Gut instinct

How does your story compare? Do you have anything in common with these mothers? Read their stories:

  • “I remember like two weeks before she was born, I had a huge panic attack, I felt something was wrong with the baby because she hadn’t moved all day, and also just an instinct. I made my husband take me to hospital, they hooked me up to all the monitors and said nothing was wrong..but after she was born, it became obvious by her sluggishness, blue feet, etc. Something was wrong, I definitely thought back to that day.
  • “My gut instinct told me something was wrong. He was also very quiet in the womb, but he was huge (8 lbs, 12 oz). I had a non-stress test and it was hard to wake him up. I had to drink juice, walk around, etc.”
  • “I kept saying he was lazy compared to his sisters because he didn’t move much.“
  • “I did have a couple of weird things during my pregnancy. I was on a flight when about 11 weeks pregnant and I thought I was having a miscarriage…heavy bleeding. Everything checked out ok though. There were a couple of other odd things that happened to me, only during this pregnancy. But always he seemed fine. He was diagnosed at 4 months old.”
  • “My daughters heart rate jumped up and down a lot. Like the range was 80-180 in the last trimester. She was also hard to get moving. Towards the end it took a lot to wake her and got her kick count. Also I always had this gut feeling something wasn’t right.”
  • “My daughter was not very active in utero. I felt like there was less fetal movement.”
  • “The only thing is an isolated event during my 3rd trimester when her heart rate was above 170.”

Questions about CHD? Do you want to share a personal story to connect with other heart moms and their heart warriors for support in Michigan, New Hampshire, Oklahoma, Texas, Ohio, Illinois, West Virginia? Email us Skepticalworld@gmail.com 

Blog Article:
Is your newborn struggling to poop, gain weight, or absorb food?
10 Helpful Ways to Control Fever in Pediatric Cardiomyopathy Infants
Shopping for Heart Failure Awareness Shirts for Adult and Kids?