Congenital Heart Defect and VSD

It is the VSD. Take him to the cardiologist. Even if it is small, since he is symptomatic-he needs treatment for it.

My son was born with an ASD, but we didn't find out until he was 4 years old.
We went through a very difficult time until he was 1 year old. The pediatrician diagnosed him with failure to thrive, disagreed with my choice to breastfeed, later thought I was crazy for offering vegetables, and threatened to report me to CPS because my son wasn't gaining weight. We went to child care classes, feedings every 2 hours, trying to wake him up by making him uncomfortable, renting a baby scale to weigh before and after each feeding, taking pictures of every solid food I offered him, and seeing a nutritionist, endocrinologist, and geneticist. None of them found the heart problem.

I don't think my son had reflux, but I do think that the heart problem was related to the poor weight gain. I asked the cardiologist about this when he was 4, and he did say that the skinny body type is pretty common with kids with heart problems.

Either issue can cause the poor eating, as my dd had both. Has he always been a poor eater, or is this a new issue?
I would definitely start the rice cereal with ebm or formula-whoever told you not to needs to be reconsidered as your child's doctor (unless there are other issues I am not aware of) When was the last cardio appt? (Who is your cardio, I am here in SA as well)
You are like me re. the stress-but bm in the freezer is not a thing to worry about, mama, let that one go ((hugs))
Are you bfing or bottle feeding? Depending upon which, a lac spec or a nutritionist can be of assistance-you could get some insight into the feeding issue, if it's his heart or something else-either way, you get some "subjective" feedback to present to your doctor.
PLEASE feel free to contact me via pm if I can help in any way-I know how stressful poor feeding and poor weight gain is, esp when accompanied with reflux and other special issues.

Hugs and prayers~C.

My daughter was born w/ a VSD & ASD & has severe reflux. For the first 6 months she had problems feeding & with her temperature (from getting sweaty to dropping down to 96 degrees). We did a number of things to help her (she also ate about 1-3 ounces at a feeding before getting too tired to eat).

First of all, we added calories to the breastmilk by adding a scoop of Enfamil Enfacare to it (I would ask a pediatrician/nutritionist advice about this first). It's a higher calorie formula and increased the amount of calories in the breastmilk. We also started to feed her through an NG tube (a tube that went through her nose into her stomach). She would eat as much as she could through bottle feeding and then we finished the last few ounces via a machine. It's not ideal but if you want your child to grow more and get more nutrition it will help. At 6 months old (she's now almost 2), she had her VSD repaired (a small hole remains but it's not symptomatic) and she has never had a problem eating since (she still has severe reflux and still eats well).

In my situation, the heart defect played a big role in her appetite (not her appetite, just her stamina to drink the breast milk). The reflux never slowed her down ha ha. Best wishes and feel free to contact me if you need more info ____@____.com Bless!!

As a parent who personally experienced serious heart problems, yes, it affected my appetite. It also affected my happiness and quality of life - so dont be surprised if baby might seem unhappy alot of the time. It is something that no matter the specific problem, the general problem is such a big one that it affects every aspect of your life - especially the quality. I would just try to make the baby as happy as possible by allowing child to do what makes he/she happy --- try putting baby on floor and letting he/she roll around/do whatever. Maybe that would help??? Also, keep baby out of the car as much as possible. Ive never heard a doctor say it, but from personal experience, I can tell you that a vehicle brings on a LOT of stress that isn't necessary if you have the option to skip whatever it is that brings you to put baby in the car in the first place. Oh, another thing ----- TV/movies were HUGE triggers for my heart to start beating irregularly/eventually just give out. Anything that made me feel suspensful or tense or exciting would trigger it. I don't know how similar it is for baby, but I don't think it to be much diff? Let me know!

G., my son was also born with the same defect. He is now 4 yrs old. He had no reflux and no problems eating. He was a very "chunky" baby. He no longer has VSD. He did not need surgery. Has your son been evaluated by a Cardiologist? I would recommend for your baby to be evaluated by a Cardiologist.

The best of luck,
Elisa M

My niece had severe reflux and the doctor suggested adding rice cereal to her bottle when she was only around 3 months old for two reasons a) it adds calories b) it is thicker so she would be less likely to spit it up. I'm not sure why your Dr. said to wait. Rice cereal is recommended for babies 4 months old and older (check the label). I think it would be fine to add rice cereal either in the bottle or mixed with breast milk or formula (don't use water; it won't add calories). If you add rice cereal to a bottle make sure it's not too thick and maybe even cut the hole in the nipple to make it a little bigger. A bigger hole would also make less work for him to get the milk he needs...less risk of fatigue.

Remember that small frequent feedings are better in dealing with reflux. Try feeding him 1 or 2 oz. every 2 hours during waking hours. Go with your mommy instincts. If you think he would benefit from rice cereal then go for it! Good luck to you and your little miracle!

My heart and prayers go out to you...my son was born with TAPVR and had open heart surgery at 14 hours of age...he also was diagnosed with reflux, however, I later discovered it was the Reglan he was being given that caused the body positioning that the pediatrician claimed was from reflux. The sweating and fussing while eating seems strange, be sure to mention this to his cardiologist. I had wonderful cardiologists in San Antonio, through the Air Force and then the surgeons were absolutely amazing. He ended up with 3 surgeries and a pacemaker. For the weight....my docs recommended adding vegetable oil to the breast milk. This helped to increase the calories. As a nurse, our doctors recommend waiting until at least 4 months of age to begin cereal, as a mom....I started my son at 3 months. It seemed to help him fill up better. I was concerned with his weight and wondered if my breast milk posed a problem as both of my older children were unable to breast feed. They flourished on formula. He does need the immunity your breast milk provides but you could also request they test your breast milk for the necessary nutrition he needs. I still feel 6 years later that mine was sub par. Always keep in mind, you are the patient and have the right to request a second opinion and make sure the second opinion is not coming from a team doctor....feel free to contact me if you need to ____@____.com love to your family!

UPDATE: Since it won't let me replay another answer, I'll just update mine. I saw your response that he was repaired, except for the VSD. If it's affecting his feeds, he may need it closed - they could probably do a cath to repair it. The nutrionist is a good idea, cause they'll bump up his calories by putting additives in the breastmilk (unless you are already doing that), and will give you the minimum feeds he "should" be taking total daily. This is just based on what I've seen with inpatients at the hospital. Wish you luck!

Have you discussed this with his cardiologist? I'm a pediatric nurse and have worked with cardiac kids, and yes, his heart problem could be causing the poor feeding - possibly just due to fatigue. Also, severe reflux could definitely be playing a role in his eating problems. You didn't say if his heart defects were repaired or not, but I've seen babies eat poorly both before and after repair. I would speak with his cardiologist and if his reflux is really severe, maybe even take him to a gastroenterologist. Good luck!

My baby, too, was born with a heart defect. It was not discovered until he was 4 months old, but the lack of appetite sounds very familiar. It turns out he was getting tired during his feedings. It really wore him out, so he did not eat as much as he should,which led to lack of weight gain. Unfortunately, we did not figure it out until he was diagnosed. After his surgery, his appetite really opened up. Good luck!

I am sorry, I don't know about the heart defect affecting reflux. But I wanted to ask, did you dr give him anything for the reflux? My firstborn had it really bad, like just take an extra shirt everywhere bad. My dr put him on prevacid and he did great and was always in the top of his weight range. He still spit up all the time but it didn't cause him pain. Just wanted to throw that out, best wishes!

Go with your gut. If you feel he may be better off with some solids, give it a try. I always mixed mine with breast milk so they would still be getting all the good stuff. I also started with barley and oat cereal and not rice.

Is he on medication for his heart? That may affect his appetite.

Good Luck!