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.
I took Anatomy in high school, but I guess I wasn't paying much attention when we learned about the heart. No matter how many doctors I talk to, I can't seem to get a good grasp on my baby's heart defect and pulmonary hypertension.
Yesterday my mother-in-law sent a letter to my older son explaining why his brother needs the constant low-flow oxygen he has recently been prescribed. It is the best description I've ever read:
Hi again Caspian!
I wanted to tell you a story about why your brother needs oxygen, and what the doctors will be fixing in his heart when he gets a little bigger....
Think of Benny's heart and lungs as a little house, with a furnace to keep it warm. It's cold outside, and Benny's little house has a door, and a window, and that furnace. Because it's cold outside, Benny likes, and needs, to have a warm little house.
Benny has to go outside frequently to get supplies--food, air, and wood for his furnace. Every time he goes outside, he opens the door and then closes it behind him, so the house won't get cold.
But Benny's door doesn't close quite right. The door to YOUR house opens only one way on its hinge, and it closes tight when it closes. Then to open it, it takes some effort.... you have to turn the knob, and pull it open. And when the wind is blowing hard outside against it, even in a storm, the door doesn't blow open on its own. It's SHUT, and shut tight.
But Benny's door to his house is more of a swinging door. It sometimes moves BOTH ways, and if there's a big wind outside, the pressure can blow it open and let the cold air in, even though Benny wants his house to stay tight and cozy warm. Sometimes that door is just not tight.
Also, Benny's window doesn't quite close. The glass doesn't go all the way down to the bottom--there's a few inches that are always open. The window wasn't measured absolutely correctly when it was made. So cold air is always coming into Benny's little house.
That makes the furnace work overtime, and harder than it should.
In the real world, Benny now has oxygen--which you can think of acting in Benny's little imaginary heart and lung house as being an extra heater. It takes some of the burden off his furnace in keeping his house warm. It also acts sort of as super fuel for his furnace itself, and protects it from getting overworked.
When Benny has his surgery, the doctors will do two things:
1. They will create a bottom to Benny's constantly open window. They'll put another piece of good, strong glass in that window, and then it will shut tight--not letting in any more cold air all the time. When the window has to open, it will open. When it has to shut, it will thus be able to shut. No more always a little open, letting in cold air.
2. They will fix Benny's door. No more swinging open with big winds outside. They will fix it so that it will only open ONE way, and when it closes it will shut tight. When the door has to open to get supplies, it will open, and then shut tight afterwards....not only to not let in cold air constantly, but also to not let those supplies roll away by accident.
So then, instead of Benny's little house being cold all the time-- because cold air is always coming in from the window and door that don't shut tight-- thus making his little furnace work so hard, and constantly, to help keep the house warm----with a repaired door and window, his furnace can work normally, like it should, and not so hard all the time. Also, Benny's house will be warmer and more comfortable. Everything will be easier, and more comfortable for Benny, once that door and window are fixed.
So until then, the oxygen will help his little furnace--take some of the burden off it by acting as super fuel for it, and also by acting as an extra heater.
It isn't heat, though, that's the issue--it's oxygen. Benny's heart and lungs need some help right now to circulate oxygen to his body. Our hearts actually have (what you could call) windows and doors between its chambers (the four "rooms" inside our hearts). They have to open one way, and one way ONLY,and they have to shut tight, and not open up backwards with pressure against them. Those doors and windows are called heart valves.
So the doctors will fix up Benny's heart, so that his heart home will stay nice and cozy warm, and his real body will be able to obtain and distribute oxygen well. Then when he gets older, and learns from you and your parents how to run around and ride a bike and swim, his body will have the energy and oxygen to do all that. The doctors know all about how to fix things. Benny just needs to get a little bigger first, before the surgery, and the oxygen he's using now will keep things going okay until that time.
You of course can't explain all this to Benny, but when you talk to him,you can tell him that even though sometimes having to have oxygen is blech, it's really helping, and it will be okay. He'll always have someone nearby to take care of him and keep him company.
So, big brother--I hope school is fun--your clubs, your friends, your teachers. Send us an Email and tell us when you get a chance.
Grandma and Grandpa
We have some news about our baby that we would like to share with you. Our baby has Down syndrome and a heart defect.
This was scary news for us to get, and it’s taken us awhile to process it. Fortunately we live in an area that has a lot of resources for parents like us, and we’ve been able to connect with other parents who have been through this. We still don’t know exactly what to expect, but we have a much better idea now.
In many ways our baby will be the same as most babies. It will be cute and cuddly and need lots of love and attention. It will sit up, crawl, walk, talk, go to school, read and write, learn lots of things and eventually grow up to be an adult. The differences will be that our baby will need extra time, help, and open-heart surgery at 4-6 months.
The heart defect is called an AV canal defect. This is a common defect, especially with babies that have Down syndrome. What it means is that the heart is not separated into four chambers, but is open in the center due to a missing valve. Otherwise the heart functions normally. Eventually this can cause the freshly oxygenated and depleted blood to mix, and can put more pressure on the lungs, potentially causing damage.
Thankfully there has been a surgery to fix this type of defect since the 1950’s. We have a great children’s hospital right near us in Denver with experienced surgeons that have done lots of these surgeries, and the surgery has a 98% success rate. Most likely once our baby has the surgery the heart will be repaired for life.
In addition to heart defects, there are other health problems that are common in children with Down syndrome. Whether our baby has these problems and to what degree we won’t know until we get there. Again we are lucky to live in an area with great support and resources for parents of children with Down syndrome.
At this point we do not want sympathy, but we do want love and support. You can support us by learning more about Down syndrome, staying positive and congratulatory, and recognizing that we might need extra help along the way.
Visits are encouraged! Come get to know our baby, give us a little support and Caspian the extra attention he will most likely need.
Here's a short video of Caspian explaining what Down Syndrome is to my niece Lily. He gets some of the facts slightly wrong (it is a difference between 46 and 47 chromosomes, not 36 and 37, and the soft muscle tone is called hypotonia) but otherwise he explains it beautifully, and I love the acceptance and ease with which my niece receives the news.
Here are links to some resources for you to find out more about Down syndrome and the AV Canal Defect:
A great booklet for loved ones of someone who has received a Down syndrome diagnosis, I highly recommend you take a minute to look through this, it will likely address some of the feelings and answer some of the questions you may have
Information on the AV Canal Defect
Information on the Buddy Walk, a walk to support Down syndrome This is a mile long walk that takes place all over the world to support Down syndrome awareness. Consider signing up for one near you, it would mean a lot to us.
Here are some good videos on Down syndrome:
Caution, this video might make you cry: “Dear Future Mom”
“Just Like You” - Teens with Down Syndrome and their best friends talk about what it's like
“Tim’s Place Albuquerque: Service with a Smile” - An adult with Down syndrome serves up hugs and meals, if you're in Albuquerque make sure to stop here for lunch
There are many more resources to check out, but those should get you started.
Our due date is August 14th, though the baby could easily be born at any time in August, so please don’t rush us as the due date nears, we will let everyone know when the baby is born.
We're very excited that we have been given the go ahead by the cardiologist to have a natural birth, and we've found a great option with great medical care on hand.
We will be delivering with Boulder Nurse Midwives at the Boulder Foothills Hospital Birth Center. This is one of the most progressive hospitals in the country. If the baby does need intensive care, we will simply be moved to a family suite with a special care nursery attached, allowing us to stay close while the baby receives specialized care. (Most hospitals whisk the baby away to another floor, and the parents are only allowed to visit, so we feel so lucky to have this option available to us.)
We are not finding out the gender until the baby is born, so it will be a surprise. Feel free to put your bets in now, you've got a 50-50 chance of being right.
Thanks for your support and understanding,
Taymar, Max and Caspian
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!