by Patricia Manzano-Chupungco
The moment I found out I was pregnant, breastfeeding was never a question. When my eldest child was born, it was then that I realized that breastfeeding was not as easy as it seemed. In spite of the challenges, we persisted and succeeded.
When my second child, Janina was born, she was diagnosed with Apert Syndrome, our immediate concern lay on her chances of survival since very few doctors knew about the Syndrome. Janina had breathing and cardio issues and had to be kept in the high-risk NICU. Later on, when the doctors assured us that children with Apert Syndrome could live normal and healthy lives, we were able to get our bearings and focus on the long road ahead of us.
Janina was born with a high-arch palate the doctors expected her to have difficulty breastfeeding. The first time the nurses tried to feed her from a bottle, milk would spill everywhere. Whatever little milk I could express, my husband would immediately bring over to the NICU. As Janina gained strength and the tubes about her were slowly removed, I was allowed to breastfeed directly. It’s hard to describe the overwhelming feeling of having a frail baby nursing in my arms. My best comfort was that every drop of breastmilk would definitely help her become strong enough for us to bring her home ASAP.
Several cases of Aperts children having difficulty in breastfeeding. However, Janina proved to be resilient and determined to take nothing but breastmilk.
When she had her first cranial vault at 10 months, one of the first questions I asked her doctors was if the head surgery would allow me to continue breastfeeding her and I was told that I could.
Janina had to be kept in the neurosurgery ICU immediately after her surgery and was not allowed to take in anything. So in between bits of sleep and watching over her, I would pump milk and store it. Soon, she was allowed to take in liquids, except that we could still not carry her – so we had no choice but to give her expressed milk. Perhaps it was because of her high arch pallet or maybe because the bandages and tubes made her uncomfortable, drinking milk from the bottle was somewhat difficult for her and a lot of the milk would spill from her mouth. I couldn’t wait till it was okay for us to carry her so she could feed directly. True to her form, as soon as she was able to feed directly, there were no more spills and she fed heartily.
We were able to bring our little girl home in five days. Two days later the doctors removed the staples from her head. While she has yet to undergo several more surgeries, we are confident that she will be able to weather these with ease.
Many would think that special care is required for children with special needs. I wouldn’t say that my daughter is a special needs child because she’s just about as normal as any other child save for some physical differences. I believe every child has special needs – the most important of which is all the love, care and attention that their families can give them. I breastfeed my children because it’s the best way I know of caring for them and ensuring their health.
Janina remained exclusively breastfed until she was 16 months and was on mixed feedings until only recently when we weaned her. She is now 2 years and 8 months old and is an active and intelligent child.
**This story was originally featured in the April 2011 newsletter of the World Alliance for Breastfeeding Action.