This simple, natural fortification method for a high calorie infant formula helped my son Benny stay healthy and gain weight before his open heart surgery at four months old.
Because my son had congenital heart failure due to his complete av canal defect he stopped gaining weight when he was about 6 weeks old. This was a terrifying time for us. We were unable to find a bottle he would take, and I was reluctant to give up breastfeeding, so I knew I had to find a solution that would allow us to continue breastfeeding while helping him gain the weight that he needed.
Since he was burning more calories just with the effort it took to breathe, he needed a higher calorie milk. In order to keep him at the breast, I nursed him every 2 hours for 20 minutes while using a Supplemental Nursing System (SNS) filled with high calorie milk. We started at 24 calories and eventually increased to 26.
Eventually we were able to get him to take a bottle by using a preemie nipple on a Dr. Brown bottle. In between nursing he was given as much as he could drink of an 8 ounce bottle of fortified milk. Often I could not pump enough milk in addition to what I was breastfeeding, so we supplemented with the goats milk formula listed in the table above.
Using maple syrup to fortify breastmilk and the goats milk recipe was recommended to me by a highly respected Naturopath who specializes in the treatment of children with Down syndrome. She had used this with her own son who has Down syndrome as well as with other patients. At first I was hesitant to use maple syrup, but she pointed out that in comparison to the ingredients in commercially made formula, organic natural maple syrup is much easier for a young baby to digest.
This turned out to be very true. My son became constipated and uncomfortable when we tried using any kind of commercial formula, which backfired on his weight gain since he wouldn't want to eat when he was constipated. With the maple syrup and goat milks formula my son had no health problems caused by the fortification.
I also worked with a doctor who specializes in high risk infant feeding, and that is how we came up with the system of feeding him every 2 hours for only 20 minutes at the breast with fortified milk in the SNS, and fortified bottles in between.
It was a lot of work, but I'm so glad that we did it. My son was a healthy 11 pounds when he had his surgery at 4 months. The surgery went beautifully and he returned to exclusive breastfeeding as soon as he was off the ventilator after surgery. His entire hospital stay for the surgery was only 5 days and we have had a beautiful breastfeeding relationship ever since.
If you think that this might work for you, please talk to your doctor first. My cardiologist made the calorie recommendations and was on board with everything that we did to help my son gain weight. This was critical going into surgery.
I hope my story can help other parents and medical professionals who are looking for alternative ways to fortify babies milk in order to help them gain weight. Please feel free to comment here if you have questions or would like to share your own method for helping babies gain weight.
Here are some pictures of our journey. As you can see, we started off in a very scary place, and ended up in a very happy one.
2/2/2018 08:58:13 pm
2/7/2018 11:23:09 am
Hi, The scarring from the OHS was really not too bad. It kind of looks like an exclamation mark. It does not show in the last photo but it is there.
2/23/2018 12:41:52 pm
Thank you Taymar for replying to me. I would really like to get in contact with you. Our Cardioligist and Pediatrician wanted to put me on formula and were not very helpful with the nutrisional side of VSD. My baby has cows milk alergy. We live in a small town and specialist are limited.
7/17/2018 12:56:50 pm
Hi, I've sent you an email. If you have enough breastmilk I would recommend using maple syrup with breastmilk to add calories. Please contact your cardiologist and let them know your plan, if you have a lactation consultant they may also be able to help you work with the cardiologist to come up with a plan. If you are able to breastfeed I recommend the technique of breastfeeding with the fortified breastmilk in an sns on both sides for 20 minutes, then giving a bottle in between of fortified breastmilk. Depending on how many calories you need to add you just look at the calorie content of the maple syrup, and add the appropriate amount to the milk, if that makes sense. It takes a little math but then should be fairly easy and a much better way to get weight gain without adding all those chemicals from formula. Maple syrup is much more natural and much safer.
9/1/2021 08:04:37 am
I’m in the US. at one of the top ranked hospitals. I told the dietician that I wanted to remove the formula from my BM and fortify with maple syrup. They claimed that it was against their policy to give the baby food products. So I have asked to see that policy so I can read it for myself. Her argument was that they won’t introduce sugar into a new norms diet. I told her that’s exactly what they had already done. The third ingredient in the formula was corn syrup solids although in the nutritional facts it does not list sugar content. I am pushing for this. I hope I can get this done. How did you get your hospital to allow it?
9/1/2021 01:54:43 pm
I worked with a combination of an ND who specializes in special needs pediatrics, a lactation consultant that specializes in infants with complex medical needs out of Children's Hospital in Denver, and his cardiologist at the Rocky Mountain Children's hospital. Dr. Erica Peirson at the Peirson Center for Children in Portland, Oregon is the doctor who gave me the original formula, she works via telehealth and is amazing. I'm sorry you are experiencing this from a dietician, that is very unfortunate. Most likely if you get your child's other medical team on board she will agree. Let me know if I can help.
5/25/2023 08:07:23 am
Hello mate great blog.
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Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!