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Sturge Weber Syndrome (SWS) & Breastfeeding Mothers' Stories
Tinee Luparelli, Bermuda
Photo: Courtesy Lena Ostroff

 

Tinee believes that breastfeeding her ailing daughter gave her the best possible start in life.

Gianna was born with a rare congenital neurological and skin disorder known as Sturge Weber Syndrome (SWS) and Nevus of Ota (NoO) (a blue hyperpigmentation that presents on the face).

I had never heard of Sturge Weber Syndrome or Nevus of Ota, but these terms quickly became a part of my vocabulary. The SWS included ailments such as glaucoma (often leading to blindness), mental and growth retardation, and seizures. Needless to say I was horrified.

Although I was considering breastfeeding prior to her birth, these diagnoses greatly influenced my decision to ensure that she got the benefits of the antibodies and nutrients my milk would provide. Our breastfeeding journey started with a challenge. The day she was born I fed her from my left breast and when I went to switch her to the right, we discovered it was engorged and Gianna would not latch onto it. The lactation consultant advised me to pump my milk and feed her from a spoon until we were able to establish a breastfeeding relationship several days later. I was determined to breastfeed and I never let anyone discourage me from obtaining that goal.

The day Gianna turned a month old she came down with a fever and, after a spinal tap, was diagnosed with a respiratory syncytial virus (RSV) and hospitalized in the NICU for four days. I never left her side and breastfed her; I refused the offer for her to have formula, as I felt it was essential that she have the beneficial antibodies and nutrients in my milk. We returned to our home in Bermuda when she was four months old and I had to return to work almost immediately.

Putting her in day care was a concern because Gianna would not take a bottle. She did not even use a pacifier. She only wanted my breast. I was fortunate enough to find a caregiver who had the patience to use a spoon to feed her. I also used a sippy cup, which she seemed to take to without too much difficulty. Another problem was that pumping was not easy for me—I never took to the pump—I had a hospital-grade one, but couldn’t relax enough to get more than a few ounces at a time, and many days I only sent about eight ounces to nursery.

My pumping difficulties were compounded by the fact that my office did not have a suitable place to pump. They suggested the bathroom, but I declined as I would not my prepare my own meals in a bathroom and I was not about to prep hers there either. Instead I opted to give up my lunch break (nibbling a snack at my desk instead) so that I could leave work earlier. In addition, I journeyed home (not far from work) on my coffee break (combining two 15-minute breaks as one) to pump. I took fenugreek, which I found increased my supply. I left work about 3:45 each afternoon to collect Gianna from the sitter and often breastfed her in the car before we left as she was so hungry. Gianna seemed to feed almost nonstop from the time I picked her up until she went to sleep. It was exhausting but worth it. Initially I had only intended to breastfeed for six months, but the doctors and I quickly determined that it was easier to perform many of the required intrusive tests if I was breastfeeding her at the same time. The neurologist also felt that breastfeeding for 18 months would be beneficial to her brain development. Mothers'StoriesAnAilingChild_Tinee_005-ws8x12

Gianna’s Sturge Weber Syndrome and Nevus of Ota require us to travel to the Children’s Hospital in Boston every six months for her to be assessed by a team of doctors, which includes a neurologist, opthamologist, geneticist, dermatologist, gastroenterologist, and glaucoma specialist. The physicians are amazed she does not have the typical severity of the ailments people with SWS have. Her brain functions are normal and her development is ahead of the curve with no growth or mental retardation. She does occasionally suffer with petit mal seizures, but fortunately has only had two brief grand mal seizures in her life. She was diagnosed with glaucoma at birth (and has been wearing glasses since she was two weeks old) and although her pressures are checked every six months they are not as high as SWS patients usually suffer. I attribute all of this to the pronged breastfeeding.

When she was 30 months she breastfed mainly during the night or if she was unwell. We continued this routine until she was five years and four months old. We stopped when she started primary school and because I required major surgery. Although I myself was not breastfed and family and friends could not understand my desire to do so at all, let alone for so long, I made the conscious decision to do what I felt was most beneficial for my daughter. I hope that by sharing our story I can inspire and encourage other breastfeeding families to persevere, for as long as they feel they need to do so. 


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