Mark and Lorraine Martin are a Mennonite couple from Lancaster County, Pennsylvania. Lorraine is a sister to Glen Wenger; Glen and his wife Brenda have two girls with MSUD. So Mark and Lorraine were tested and found to be carriers before they were married. They had two unaffected children before Crystal was born. Crystal had the advantage of being detected right after birth and has done well.

Does breast feeding sound appealing? Can you breast feed an MSUD child? What are the pros and cons you will need to face in the process? I'd like to share our experience in hopes of answering some of those questions.

Our third child was born October 28, 1997, and we named her Crystal Lorraine. As usual, I started breast feeding her. At the age of 24 hours, she was diagnosed with having MSUD. One of my first thoughts was, "Oh no, now I can't even breast feed!" But I also knew that Dr. Morton was interested in trying breast milk for an infant with MSUD. The mother would pump, expressing milk for her baby, and add the milk in measured amounts to the formula as needed. So we bought an electric, dual pump to begin our journey. Colostrum is too high in

protein so it wasn't until the fourth day that I could give Crystal some of my own milk.

One immediate change was that Crystal took her formula better. Up to that point, she cried and gagged over it. It just seemed she liked the taste better with my milk added.

At first, I did fairly well with my milk production. I was making up to a quart a day until she was about 4 months old. So we put the excess in the freezer. Once she was 6 months old, I stopped pumping, and we began using the freezer supply. She is now 9 months old and still getting mom's milk.

Crystal seemed to be a very healthy baby, which Dr. Morton contributes to the breast milk. He definitely feels it played an important role in keeping her level's stable. We noticed her first ear infection once we switched to frozen milk. We believe some of the antibodies were frozen out. Although she was exposed to many colds and flues the first half year, she never got really sick. She did have a respiratory infection at 8 weeks old which made her leucine level go up to 4 mg/dl. But she was never on a sick-day formula till after 6 months old, and that's when she developed her first ear infection and a cold, which caused her leucine level to reach 8 mg/dl. But it wasn't long until she was her happy self again.

Now, what about the disadvantages? When my baby was quite small, she'd wake up at night and cry - and guess what Mom had to do? That's right, pump! So Dad had to be available to do nighttime feedings the first while. Also, if you have other young children, it can be stressful being tied to one spot while pumping. Putting a phone by the chair was a plus, as it seemed to ring as soon as I was ready to pump. One other disadvantage that comes to mind: it's a lot of paraphernalia to pack up if you need to be away. Then once you reach your destination, you'll also need a private spot to pump. Bathrooms work well, providing you're not holding up a line of people! You'll also need to have sterile storage containers for the milk at all times. Those are the disadvantages.

But to me, the advantages far outweighed the disadvantages. I'm still thankful that I chose that route. It meant everything to me to see my baby enjoy her formula. It was one thing that I could do for her. And if it meant a healthier baby, the disadvantages were all worth it to me. Then there is an added financial benefit as well. At 6 months, we figured we went through only 4 , cases of MSUD formula versus 6 to 8 cases without the breast milk. Because my breast milk is lower in protein than Similac or any other formula, we could use more mother's milk which in turn meant less MSUD formula. Plus we didn't have the added expense of Similac or other formula.

Best wishes to all of you mothers who may give this a try. If you have questions or would like to rent the pump, please feel free to call us. We'd be glad to help where we can. Our phone number is (717) 733-3070.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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