Did you know that approximately half of all infants born with Down syndrome have a heart defect.
Many congenital heart defects have no signs or symptoms. Sometimes a doctor can hear a slight murmur in an infant, sometimes they can’t. But that doesn’t always mean it a heart defect, and usually murmurs go away as the child grows up.
But for some of the severe case of congenital heart defects, they will show signs or symptoms. Here are some things to watch out for:
- Rapid breathing
- Cyanosis (bluish coloring of the tongue, lips, skin and/or fingernail beds)
- Fatigue (note that most babies sleep a lot, but more than “normal” fatigue or tiredness may indicate a heart defect or other medical issue)
- Poor feeding
- Poor weight gain
If you have concerns about any of the above or you child’s health you may want to consult with a pediatric cardiologist.
As you bring your child with CHD home, it’s a good idea to have a consult with a nutritionist from the hospital. Feeding a baby with CHD is a whole different ball game. They have a hard time gaining weight, their heart is working harder.
Some of the reasons that infants with congenital heart disease grow slowly include:
- A fast heart beat
- Breathing harder and faster
- A poor appetite
- The need for extra calories by the heart and lungs
- Poor digestion of food
- Tiring easily/ falls asleep with feeding
- Frequent colds
Because Jacob had Tetralogy of Fallot and because he had Down syndrome made it even more difficult for him to gain weight. We had several tests done, because we weren’t sure if he had issues with acid reflux or other issues, as his oxygen levels would always dip after he ate.
One of the test performed was a “Swallow Test”. Which determined that when Jacob drank his formula, sometimes he was silently aspirating it and sometimes the formula was sitting in the back of his throat. The Speech Pathologist decided to thicken the formula so it would be easier to go down.
We also went through different nipples, as we determined the slower nipples were causing Jacob to work harder to get the formula. We also had to place our finger under Jacob’s chin to give him some support as he drank, because this also caused him to exhaust quicker.
Here is a quick snapshot of the Feeding Tips that the Speech Pathologist gave us.
There are also other things to consider when it comes to tube feeding or introducing solid foods. That should be discussed.