Breast Milk & Supplementation

Q. It’s the breastfeeding advocate again. Thank you for your response and my heart breaks for you and the loss of your baby. I’m just trying to explore this breastfeeding issue. There was something in one of the newsletters a while back about the importance of giving formula to newborns before the mother’s milk comes in. This disturbed me because I feel so strongly that nursing is the most important thing we can do for our children and if women start out with formula they are more likely to continue with formula.

Of course it’s not an answer to all problems and it didn’t save your child but nursing does prevent things like dehydration, allergies, intestinal problems etc, all things that are serious issues for FOD kids.

My daughter wasn’t given formula in the first few days of life and was okay. At age one she was, thank God, not so sick that she couldn’t nurse but a week of vomiting didn’t put her into a coma. When she wasn’t okay was at 2 1/2 when I had recently weaned her and she had her first vomiting incident. She wasn’t that interested in food and drinks and at that time we didn’t push it because it was pre-diagnosis, and she was in a coma the following morning. I don’t know, maybe it’s all a coincidence. Thoughts?

Vali

Pending diagnosis: Acylcarnitine Translocase Deficiency mom

Hey everyone! Just wanted to put my two cents in. I too am a huge nursing advocate. I nursed my first two boys until almost two and my third son until he got sick. But I had to supplement our third with formula because of poor latching, sucking, failure to thrive. It was a good thing I was not so hard headed as to not attempt supplementing. Also, I was in ICU for the first week he was home and not allowed to pump or try to nurse for a week after I got home. So the first two weeks of his life was strictly formula (a lot of it forced), and then we started in with the nursing. It took a little while, but then he got to where he was stronger and wanted to nurse more than take the bottle. I think if I had not forced him to take the formula around the clock, he wouldn’t be here today.

I definitely think that the La Leche League and all local stores, nurses, consultants, etc. should be “enlightened” to the FOD dilemma. It is one thing to be a strong advocate, it is another to be so stubborn as to possibly put a child’s life in danger. Before our Justin, you could not have told me that a bottle may be better. Now, I am open to all discussions. I think if we explain the problems and the consequences, people will be more apt to look for the possibility of something more serious than the lack of determination. I just think that with all of us being so few and far between we need to convey to as many as possible the fact that there really are medical reasons that may be at the root of a “poor nurser” or a “failure to thrive” and that if they are overlooked could potentially be fatal. As soon as the “packets” are done and I can get my hands on one, I plan on copying it and getting it to every nursing, pediatric, ER, OB, etc. entity in the Phoenix area. I encourage everyone to think about doing the same. The worst thing they’ll do is throw it away. The best thing they’ll do is share it with their clientele and spread the word.

Kimberly

LCHADD mom

I would like to put in my two cents worth (again) on nursing and supplementing. Like I have already said, I did not have any problems with my MCAD daughter when she was an infant. She was not diagnosed until she was 17 months old. When I think back though I wonder if things would have been different if I had not supplemented. She was a very good eater from the start. I could not pump so if she couldn’t be nursed for some reason, she would get a bottle. I only nursed her for three months or so.

I remember letting her go to bed with her bottle. Yes, that is a big No-No but in hindsight, it is probably what saved her. The doctor even said so. I do not recommend letting children lay down with a bottle, but I am glad I put mine to sleep with a bottle. One of my non-MCAD children had trouble nursing from the start (my oldest daughter). If I would have put her through what I put our other daughter through trying to get her to nurse, she would have had an episode at a much earlier age. I like nursing. I would recommend nursing. But I never had a problem with supplementing and neither did my kids. They would switch back and forth with no problem. I hope I don’t offend anyone. I have quite a few (La Leche type) friends. They were “appalled” at first. Each child is different (FOD or non-FOD). Let the mother do what she thinks is best for her child. This is just one of many difficult decisions that a new mom faces.

Melanie

MCAD mom

I would have to agree with you. My son was in the NICU for 89 days and I am sure some of you know what stress that is. I tried to pump and was able to keep up with his feedings until about a month before he came home. I tried nursing when he came home but frankly with all the other stresses of taking care of him, (feeding every three hours with formula, oxygen 24 hours a day, two monitors that false alarmed all through the night, and a mountain of meds and doctor’s appointments throughout the week) I just couldn’t keep up with double duty (formula and trying to pump). In addition I just couldn’t produce enough. I had a snotty nurse give me a guilt trip about it. Finally, I just had to stop. I had to maintain enough energy to keep my son and me alive! I find that the most energetic advocates of nursing are the ones who don’t really have a problem doing it. Don’t get me wrong. If I could’ve done it I would’ve. But in my case I just couldn’t physically.

Addison

My child (unspecified metabolic disorder) did not tolerate breast milk. I tried very hard to nurse and he would latch on and suck but did not get much. He did the same from the bottle when it was filled with breast milk or formula. When given pedialyte or apple juice, he sucked it down. Henry self-regulated his diet from birth. We now know that he doesn’t metabolize fats or proteins normally. Henry also will eat nothing when sick with a stomach virus and when not feeling well would have nothing to do with breastfeeding either. I do think that each child has his own food or drink that they tolerate better when sick. One of Henry’s favorites is rice cereal (even now at 28 months).

Betsy

Undiagnosed FOD mom

I can only speak from my experience but here’s my two cents worth. My son died with his first MCAD episode at three days. About four hours after his death my milk came in. My first son was breastfed. The big problem is that first-time parents do not know what is right or wrong when it comes to much of anything about newborns. Most of the time they are lucky and everything is fine. Ten years have passed and my memory of that time period is foggy, but I believe he was not nursing well from the beginning. Combine that with a circumcision and leaving the hospital when 24 hours old…a lethal combination for MANY FOD babies. I am not sure if the other FODs can present so drastically as MCAD did for us. Maybe breastfeeding without supplementing at the newborn stage is more of an issue with just MCAD babies. All I know is that I would give anything to know then what I know now!

Jacque

MCAD mom

It’s an issue with all the FODs–unfortunately those who think one should ONLY nurse NO MATTER WHAT–don’t know about these disorders and others like them (i.e. organic acidemias, urea cycle disorders etc.), and if they DID know about them and the consequences of an infant not getting sugar/carbohydrate calories from the very beginning (and not three days later when the milk usually comes in) they wouldn’t be so rigid in their thinking that ONLY nursing is the way to go. Professionals AND families need to be aware that supplementing (even if its just sugar water) may save THEIR child’s life someday!

Deb

MCAD mom

Hi, again. I’m one of those “La Leche types.” I sincerely thank everyone who responded to my questions. Your input really helped to shed some light on the subject. We’re all out their floundering to find answers to why and how this disorder impacts our children and looking for ways to prevent the loss of future lives. I will certainly contact some of my friends who are La Leche leaders and fill them in on what I’ve learned. I also want to point out that although some of those breastfeeding advocates that come on too strong are surely lacking tact, sensitivity and awareness of each individual situation, they are also passionate mothers out their fighting for a cause. I’m grateful that they were there for me when I needed assistance and support to nurse my children and I’m just as grateful that this support group exists while I swim in confusion trying to learn about my daughter’s disorder.

Vali

Pending diagnosis: Acylcarnitine Translocase Deficiency mom

I have bit my tongue for a long time over this issue, but now I must put my two cents in. I too wanted with all my heart to breastfeed. Read some of “The Womanly Art of Breastfeeding,” both my husband and I took a breastfeeding class at Kaiser and I mentally prepared myself for the ‘pain’ and the intimacy.

We came within minutes of losing our daughter when she was three days old; my milk came in the day she was rushed to Lucille Packard’s Children’s Hospital. But because we got a preliminary LCHAD diagnose back on her fourth day of life, the doctors were able to modify her IVs to reflect LCHAD, i.e. carnitine added and lipids restricted. As she was being weaned off the IV onto an NG tube and then a nipple she got about 25% MBM in her formula. We brought Ysabal (at 4.5 weeks old) home on Provimin, Polycose, MCT Oil and MBM. When she about five months old her essential fatty acids were too low so the MBM was limited to 50cc’s per day and canola and walnut oil were added. I ran out of pumped and frozen MBM just last week (at 8.5 months of age) so Ysabel is now on Portagen, Polycose, MCT oil, Canola Oil and Walnut Oil. She has been getting 11% long chain fat in her diet since February and shows good metabolic control. In fact she is now off the carnitine.

Our daughter is doing awesome and in fact ahead developmentally (this is the little girl they never expected to wake up and look around and showed brain damage on an MRI.). While I believe mother’s milk is best for most kids, I came to understand that too much for Ysabel was toxic to her body. How could I fill her body with something that may damage her? Using the MBM in the specialized formula was the best solution. No mother with a FOD baby should be shamed into breastfeeding and I would actually discourage it. Rather I would suggest that each family work with a nutritionist and add the MBM according to the child’s needs. Yes, I missed the intimacy of the feedings and sometimes it is hard for me to watch other mother’s breastfeed and yes, pumping milk was a BIG PIA, but it was what was best for Ysabel. And isn’t that what is important?

Lisa

LCHAD mom