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COPYRIGHT 2005 Mothering Magazine
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...
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