Breanna grew and flourished, and soon became a toddler and I found myself pregnant again. At the time I was so terrified I would have another baby with PKU.....even though I knew Breanna was okay I was still so new at everything that I was very unsure of what life with a teenager or even an adult with PKU would look like. At the time I didn’t meet many adults with PKU that instilled confidence in me that she would really be okay.
I started to think about this new baby and the possibilities of being able to breastfeed her. I wanted to do what was right by my child if she had PKU, but really struggled with knowing that when Breanna was a baby I had to mix regular formula with her PKU formula. This made no sense to me on, and left me wondering why I couldn’t have mixed in breastmilk instead. I started to seek out others, and investigate my options and I felt very prepared for the day my baby was diagnosed.....I planned to push the envelope at my clinic and planned on breastfeeding and formula feeding.
Turns out my next baby didn‘t have PKU and no modifications needed to be made. I was able to breastfeed and never worry about the metabolic formula. Then came my next baby, and I again started the quest to explore my options and educating myself even more. I was READY, and then she didn’t have PKU either. Soon I was pregnant again, and learned even more because it had been many years since I had my first child with PKU.
This time around my baby had PKU. Erica was diagnosed very quickly, and my clinic almost immediately told me I could not breastfeed. I was shocked and was armed with my evidence on how breastmilk had a lower phe content than the formula (I think it was Similac) they wanted me to mix with her milk. I was not okay with that, and I let them know. I told my dietitian I was going to breastfeed, and use a Supplemental Nursing System to administer the formula.
If you are unaware of what a SNS is....it is a bottle you hang around your neck that you fill with formula. It has a thin tube that the mother attaches to her nipple and when baby nurses he/she gets both formula and breastmilk. The benefit to this system is that the breasts are always being stimulated and emptied so that means no pumping to keep the supply up. Simply feed baby at the breast and give the formula all at once.
My clinic was not happy with this, and I assured them that if what I was thinking about doing produced high blood levels I would immediately stop, but I wanted to try. They tried to convince me to stop nursing to basically clear out her system and bring her levels down quickly, but I did not do that. I knew feeding bottles right from the start would mean the huge possibility of nipple confusion, as well as having breasts that were not stimulated which would mean less milk in the long run.
I started feeding my daughter with the SNS and she was at the breast for every feeding. When it came time to doing her first blood level it came back perfectly within range. The dietitian was still not convinced this would work, and so she required us to do blood tests twice a week, and as time went on things continued to go well. In fact, things were going so well that we only had to use the SNS and give formula three times a day. The rest of the time I was able to just breastfeed. Of course, there were times when modifications needed to be made....if her level came back to high we increased the amount of formula in the SNS, and if it came back low we decreased. It was an amazing balance that we were able to continue until Erica was 10 months old. At that time she started to become more and more interested in food, and with her fairly low tolerance it meant something had to change. I weaned her off of the breast and put her formula in a sippy cup. I continued to pump for about a month after she weaned and would add breastmilk into foods whenever possible.
I was so confident in what I had done that when I became pregnant with my next child I knew the plan if she had PKU and didn’t feel the need to investigate any further. That baby, however, didn’t have PKU and we were able to just nurse her as I did her siblings who didn’t have PKU.
When I became pregnant with my eighth child I didn’t think about PKU at all or the possibility of a diagnosis. I don’t really know why I didn’t think about it, but I didn’t. When Genavieve was born and diagnosed I have to admit I wasn’t prepared. In fact, I felt like the wind was knocked out of me and felt a little off with the whole thing, but I had done this whole breastfeeding/formula feeding with the SNS before and so we started to make plans to move forward. This time, however, we had a new dietitian who was so pro-breastfeeding. She loved what I had done before, and wanted to learn so she could share this information with other mothers.
Unfortunately this time I didn’t have an SNS on hand, and at the time there was no such thing as Amazon or buying it today and getting it tomorrow. It meant hunting one down. We found one store that was a little far from our house, and I told my husband to call.....it was a Sunday night, and he kept telling me they would be closed. I told him to just call because he could listen to their answering machine and see what their hours were. To our surprise the phone was answered immediately. My husband explained what he was looking for, and this woman told him there was no waiting until tomorrow because with breastfeeding you cannot wait. She met him at her store that night, and he came home with the SNS.
I set everything up and started using the SNS and breastfeeding. Unlike the last time, when I used formula only three times a day I decided this time I would spread the formula out and give a little at each feeding in the SNS. This worked even better than the time before. Genavieve got about an ounce or two at each feeding in the SNS and then was able to nurse until she was full and came off of the breast on her own. I loved this method so much more!!!
Our nursing relationship lasted again for 10 months and then the weaning process started so that she could eat more foods. Like the time before I pumped for another month and mixed the breastmilk into foods whenever I could.
Now.....all of these years later I have learned so much, and my challenges with breastfeeding led me to want to help other mothers so I became certified as a breastfeeding counselor. Today I help not only moms who have children with PKU, but also those who do not. I truly believe that if someone wants to breastfeed we need to learn how to support them, and help them achieve whatever goals they have set for themselves.
About the author: Michelle Hardy currently lives in Wisconsin and is the mother to nine children (3 with PKU). If you would like to contact Michelle directly you can email her at PKUOrgofWI@gmail.com
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