My son was born with a congenital heart defect, which presented a challenge when it came to nursing. For my daughter, breastfeeding happened instantly and naturally; she knew what to do. I was one of those judgmental women who thought that breastfeeding was easy; that women who struggled were just too uptight. My second child changed these false opinions. For my son, he was too weak to nurse and slept through his first night out of the womb.
After our home birth, we took my son to see the pediatrician. He told us he had a loud heart murmur, and that he needed to nurse for a total of 15 minutes over the next 12 hours, or he would have to be hospitalized. Fortunately, my son complied, but only after much insistance and persistance on my part, as well as many unusual nursing positions. Once my milk came in three days later, he took more readily to the breast, but it was only after his heart was repaired surgically, that I realized how much his birth defect impacted his nursing.
After my son’s open heart surgery, the drainage began to take on a cloudy appearance. The doctors through he might have had Chylothorax, which meant he would not be able to breastfeed for six weeks, as his body could not handle the fat content of breastmilk. I was heartbroken, but I knew that I wanted to nurse until he was at least two years old, so I committed myself to pumping until he could nurse again.
Instead of breastmilk, my son was given a horrible smelling formula called Portagen. My son refused to take this formula, so I bribed him promising him that we would nurse for three years when this was all over. He took the formula, and I felt some relief. After two bottles, I asked the nurses if they were satisfied so I could go take a shower. My mother took over at his cribside, but I was the only one he would take a bottle for at the time. The nurses said everything was good, so I left. When I returned, they had placed a feeding tube through is nose to feed him the awful formula. I was so angry and felt betrayed. They never used the feeding tube once I returned, and it was removed 12 hours later.
My son got horrible gas from Portagen. He cried in excruciating pain, and the doctors insisted it was the only formula he could take (they didn’t tell me that breastmilk could be made into skim milk). The pain from the gas was far worse than open heart surgery for my son, and it seemed our nightmare would never end. My breasts ached, as I knew I had the perfect food for him, and I still questioned the Chylothorax diagnosis. After four days of my son crying continuously from gas, the doctors decided to do the “breastmilk challenge”.
Since my son’s test results were inconclusive for Chylothorax, and he could not tolerate the Portagen, the doctors decided to give him breastmilk for 24 hours to see how he reacted. I had mixed feelings about this treatment: if it worked, we were back to breastfeeding; if it failed, then we would have to start the six weeks of Portagen all over again. Also, I had slowed down my milk production thinking I had to pump for six weeks, and for four days had been pouring my milk down the drain.
My son won the breastmilk challenge! It was such a relief, and his gas problems immediately ended. Unfortunately, he had become accustomed to bottles, and he would cry at the breast. When we finally were released from the hospital, I insisted that he feed from the breast. No more bottles, no more formula! The healing had begun!
Image: National Library of Medicine
More “Mother’s Milk” breastfeeding posts:
- Mother’s Milk: Boobie Boot Camp
- Mother’s Milk: Nurturing a Breastfeeding Mother, or Nursing for New Dads
- Mother’s Milk: An Eco Child’s Play Series to Celebrate World Breastfeeding Week
- Mother’s Milk Giveaway: World Breastfeeding Week
- Mothers Milk: Breastfeeding and The Non Supportive Other
- Mother’s Milk: Can We Take a Moment To Laugh at These Breasts?
- Mother’s Milk: The Benefits of Breastfeeding for Mom (Not Just Baby)
Can you explain a little more about making breastmilk into skim milk? Is this a viable alternative to the less protein rich formulas like Portagen? My daughter also recently had heart surgery and had the cloudy discharge; they sent it to the lab and they confirmed that she had chylothorax. She isn’t taking Portagen, but Monagen (sp?). I may have the pronunciation of that wrong. I am willing to pump for six to eight weeks, but she doesn’t seem to want to drink as much of their formula as she did of my milk, and I’m worried she’ll be in hospital longer due to ‘feeding issues.’
Jennifer Lance says
My heart goes out to you hsofia. My son did not tolerate Portagen, and I was so upset when they put the feeding tube in. They also tried Tolerex (sp?), but then decided it didn’t have the nutritional value he needed. I would call your local La Leche League to ask about it, as well as ask your doctors. This link from the post has a lot of great information:
The breastmilk needs to be spun in a centrifuge. From the link:
You’ll have to ask your doctors, but as long as my son was gaining weight and had the minimum requirement of liquid, they were happy. They even said he could be sent home with the feeding tube. My son and I stayed in the hospital for two weeks. The suspected chylothorax and then pneumonia he caught in the hospital kept us there longer than most heart babies.
I’m so glad to see other parents doing this for their kids. When my son developed chylothorax from a cardiac operation we spun breastmilk for over two months. But I wouldn’t do it any other way. I’m really glad there are so many blogs out there talking about this option and how it worked for their family.