Welcome to the Carnival of Breastfeeding for July! This month’s theme is “Breastfeeding the Special Needs Baby”. I asked Pittipat M. Chupungco to share her story about breastfeeding her second baby, Janina who was diagnosed with Apert Syndrome. She originally shared her breastfeeding story in a February post in her blog. Janina has recently undergone syndactyly release and Pittipat updated her story to include this recent development. Read their story below. Thank you, Pittipat for sharing! Please scroll down to read the entries of the other participants.
The moment I found out I was pregnant, I did not think twice about breastfeeding my baby. That was never a question for us. 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 thankfully, succeeded.
When Janina 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.
Because Janina had been born with a high-arch palate the doctors expected her to have difficulty feeding. At first the milk would spill whenever she tried to drink from a bottle but later on the nurses discovered the correct positioning to minimize the spills. Whatever little milk I could pump, my husband would immediately bring over to the NICU. As Janina grew stronger and the tubes about her were slowly removed, I was allowed to breastfeed her directly. It’s hard to describe the feeling of having such a frail baby nursing in your arms. Frail as she was I was comforted by the thought that every drop of milk that she took would help her become strong enough to go home with us.
I was told that there have been several cases of Aperts children having difficulty in breastfeeding. Luckily for us, 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 in the room’s refrigerator. 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 5 days. 2 days after, the doctors removed the staples from her head. From thereon, her development progressed considerably well as we noticed that she had become more responsive to other people and had begun babbling. The operation was a success. However, she was still considered to have global developmental delays particularly with respect to her verbal skills (because this was the portion of the brain that was initially constricted before her surgery) and her motor skills – mainly because of syndactyly.
You see, another characteristic of Apert Syndrome is the fusion of the fingers and toes, medically referred to as syndactyly. While the bones of the hands/fingers may or may not be complete, the skin, for some reason, had fused together thereby making movement of the hands very limited. It is important for Apert babies for their fingers – most especially their thumbs to be released before the age of 2 since this is the time when they begin to develop their motor skills.
So 7 months after her first operation, we scheduled her for the syndactyly release. One of the things I was worried most was the fasting period which is required when patients need to undergo general anesthesia. Since I was breastfeeding and co-sleeping with Janina, it was normal for her to remain latched during the night – I was in short, her human pacifier. I wondered how she would be able to handle not being fed for 8hours straight. We tried using an artificial pacifier but unlike the time when she had her first operation, she now knew the difference between the artificial one and mommy. Luckily, the anesthesiologist informed us that she could be given breastmilk 4hours before the surgery and glucose water up to 2hours before the surgery. I’d wake her up 3 ½ hours before her surgery and try to coax her to drink. Then my husband and I would switch places so that she would latch on even in her sleep. My hubby then had to be the one to take her to the Operating Room because I was afraid that if I carried her, she would automatically go for my breasts (since we knew that by that time, she would have been very hungry).
Thankfully, we survived that as well. Again, because she could not take in anything immediately after the procedure, it was my hubby again who had to get her from the OR and stay with her in the recovery room.
As soon as she was allowed to eat, she took nothing but milk the first day. Oh how she must have missed the feeling of nursing because I know I did!
My daughter is now quickly recovering from her surgery. She has never shown any fear or hesitation of making use of her hands even when it was bandaged or when the scabs had not yet fallen off. Her next surgery will be in 4months for the second stage of the syndactyly release where we are hopeful that her bones and nerves will allow her to have all 5 fingers. We are also confident that although she can expect to undergo many more surgeries in the future, we will be able to go through them all without any hitch.
Because she now eats table food, her intake of breastmilk has lessened during the day. But the moment she sees me, after a hard day’s work, she immediately moves in to her nursing position even if she had just taken a meal. This is one of my favorite bonding moments with her. No matter how tired, stressed or irritated I am, these completely disappear the moment she latches on. While she nurses, I just stare at her, play with her hands and her new fingers and thank God for bringing such a wonderful angel into our lives.
One would normally 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 best of their health.
At 18months, Janina is still exclusively breastfed and I intend to keep it that way for as long as I can.
Check out the other carnival participants!