Melissa remembered clearly the moment she was about to give birth 14 weeks too early at 26 weeks. She recalled the face of the sweet nurse who firmly told her that her daughter needed her to relax and breathe. She remembered the exact topic of conversation that the nurses and doctors had while preparing her for surgery. And then her daughter Addie was born, crying like a newborn kitten with those soft little mews. After being checked over by the neonatologist and his transport team, Addie’s plastic isolette was wheeled into her mom’s recovery room for a moment before she left in an ambulance, without either of her parents. [Read more]
Matthew Chambers and his wife Victoria welcomed their son James into the world on March 19, 2010. The next few months were filled not only with multiple surgeries and medical interventions – but also with moments of unspeakable joy and intense love. Matthew talks about his son and how what they went through together has [...]
There are more than 6,000 rare diseases in the world, and approximately 1 in 2,000 people have been diagnosed with one. Every person and/or family affected by rare disease is different in their own way, but we all share the same problem: we are “rare” and often even the medical community doesn’t know what to make of our diagnosis. My 11-year old, Mighty Z, is affected with a rare disease that affects only 800 children worldwide. Her disease does not discriminate on the basis of race, or gender, and it is known by two different names: Ondine’s Curse (its first and oldest name) and Congenital Central Hypoventilation Syndrome or“CCHS” (its modern name). CCHS is a central nervous system disorder in which the autonomic (involuntary) control of breathing is low. For Mighty Z and other CCHS patients, this means that the respiratory response to oxygen and carbon dioxide is sluggish at best during the day; and, it is absent at night, when sick and/or when stressed. [Read more]
My husband Andre and I met a little later in life, and after realizing our dream of being married in a castle in Scotland we immediately began trying to expand our family beyond our two furry children, retired racing greyhounds named Holly and Nova.
Fast forward a few years and several rounds of IVF later we were ecstatic to find out that it had finally worked and we were pregnant! We found out we were having a little boy, and we would just have to be patient until he arrived.
Week 16 we are having an ultrasound with Maternal Fetal Medicine (MFM) and the doc tells us that his cerebellum is smaller than normal, but it might not be an issue. She is concerned that his head is large and his limbs are short (pssst Doc, have you looked at me?) She decides that she is pretty certain this baby will have Down syndrome. Also, the ventricles in his brain are larger than normal and he is diagnosed with something called Ventriculomegaly, we’ll have to keep an eye on it so it doesn’t turn into Hydrocephalus. [Read more]
This story was thoughtfully submitted by one of our readers. The week after my husband and I were married, we decided we wanted children and I was overjoyed. We had my son 11 months after we were married and besides having preeclampsia, I was called a “constant contractor”. I went up to the hospital many [...]
William Christopher Rhys Storm Birth story…by Denise Perry 3-27-10, 9:11PM, Cincinnati Ohio It had been a challenge since even before day one. Infertility. A less than 1% chance of ever having a baby of our own. Fast forward two and a half years and…pregnant…naturally. What followed was about one week of true bliss. Then, a [...]
This tribute was submitted by Angela. Rachel was brought into our family on November 25, 2003, with her twin brother, Sam. Being our first children, they quickly became best friends. They could always be found together playing, coloring or reading. Rachel was the little mommy of our household. When we were teaching Sam and Rachel [...]