Enjoying My Daughter with Down Syndrome

Enjoying My Daughter with Down Syndrome
By Lizzie Martinez

Our second child was born with ease at home, as our first had been. But there she was, little and pale, with the almond-shaped eyes given to those with an extra 21st chromosome: those with Down syndrome (DS). Nasrine didn't latch on, and her coloring turned dusky: Several hours after her birth, we found ourselves in the neonatal intensive care unit (NICU).

Down syndrome, or trisomy 21, is the most commonly occurring chromosomal anomaly in the world. Down syndrome occurs equally in all races, ethnic groups, religions, socioeconomic groups, and nationalities. It affects boys and girls equally and can happen to anyone.

At the moment of conception, erroneous cell division causes the egg to have three copies of the 21st chromosome instead of two. The extra chromosome then becomes part of every cell in the baby's body. People with Down syndrome share some physical traits and have some degree of mental retardation. They can also have specific health concerns, such as heart defects, hypothyroidism, low muscle tone, and compromised immune systems. However, the mix of these characteristics varies greatly from person to person. Nasrine was hospitalized for pulmonary hypertension, or constricting lungs.

Our month in intensive care, and all that we saw, learned, experienced, and felt there, is a subject for another time. Suffice it to say that the time we spent with Nasrine in NICU was not only a time to grapple with the bureaucracy of a hospital—an institution that, by having a homebirth, we had tried so hard to avoid—but was also a time we spent in sadness, confusion, grief, and, finally, acceptance and love.

During that month, our community kept us afloat. My husband and I have lived in Austin, Texas, for a combined total 20 years, and we know a lot of people. Our families cocooned us, caring for our three-year-old son and dealing with the workings of our daily lives. Our midwife, G. B. Khalsa, went through every moment with us, hearing us out through all the places in our hearts that we had to go. My moms' group, the Milkmoms, sent a steady stream of meals. Fund-raisers and garage sales were held to help with expenses—we're still using much of the money that was raised for Nasrine's alternative therapies.

After Nasrine came home, we slowly emerged from our hospital haze and reentered normal life. We began her Early Childhood Intervention (ECI) services, such as physical therapy, and hooked up with the local Down Syndrome Association (DSA). Early on, we went to a picnic sponsored by the DSA and met families from all over the state. It was a great way to connect with other parents and to make tribal contacts for Nasrine. But something struck us—the meal at the potluck picnic was rife with refined sugar and fast food. This type of food isn't good for any child—or adult, for that matter. We realized that with our special-needs child, from then on we would actively pursue alternative practices.

I started calling around, following up every lead and contact. Every time someone mentioned something alternative that he or she had even heard of someone doing with a special-needs child, I pursued it. I called people all over the country and blurred my eyes reading on the Internet. I sought and found other funky parents of special-needs kids—parents of children older than mine who could pass on to me their knowledge and experiences. I knew that there was more for Nasrine out there than the mainstream books were telling me. The whole process was exhausting and inspiring. It still is.

Here in Austin we are blessed in having many experienced and caring alternative healing practitioners. In most cases, I quickly found highly recommended healers who continue to help guide us through these mostly uncharted waters.

Below are some of the things we are trying. Some we've just started, others we've been doing for a while. Some will come into practice when Nasrine is older.

* Tui Na (twee-na)—This style of massage originated in China 2,000 years ago. It stimulates organ functions and generally fortifies the person, based on gentle, repetitive stroking of different meridians. Our doctor of Chinese medicine has tailored a massage specifically for Nasrine, taking into account her health challenges. We rub meridian points for Nasrine's heart defect (she has a small hole in her upper atrium), to strengthen her lungs, to stimulate brain function, and to boost her immune system, we massage her at least once a day, sometimes more.

* Craniosacral Therapy—This manual therapy from the field of osteopathy involves gentle manipulation of the cranial bones. Children with DS have short ear canals and nasal passages, which makes them more prone to infections of the sinus and inner ear. They also have smaller mouths, which can make speech difficult. The beneficial effects of craniosacral therapy, I believe, will appear over the long term.

* Diet—It goes without saying that the proper food is essential to good health. However, we’re even more vigilant about what we feed ourselves now that Nasrine is in our lives. We don't feed our son refined sugar, conventionally grown food, or any additives or preservatives, and we definitely won't with Nasrine. One parent told me that her daughter, who has DS, has been free of infection since starting a "drying diet" of foods not considered to be mucus producers. A medical doctor told me that he had seen many children with DS just shut down once they were introduced to the typical American diet of sugar, additives, and preservatives. Nasrine ended up nursing well and now eats everything, from raw fruits and veggies to rice and beans. Because we want to keep her immune system strong and because wheat and dairy are associated with so many chronic allergies, Nasrine is a wheat- and (mostly) dairy-free kid. (She drinks unpasteurized goat's milk from a local farm. Goat's milk most closely resembles human breastmilk.) We also introduced her early on to the joys of seaweed, whose minerals help stimulate thyroid function. Nasrine enjoys ripping apart, playing with, and eating nori.