Meet Henry. A four year old little boy who is changing the face of beauty.
Words from Henry’s mom:
Finding out our son would be born with Down Syndrome and a heart defect (AVSD), was truly the most scary, and overwhelming day of my life. We knew that something was not right with his heart, we were referred from our local midwife for a more detailed ultrasound. We also met with a genetic counselor. We saw the genetic counselor first, she took a detailed family history, reviewed my prenatal screening, and reassured us that a genetic issue was unlikely, I was under the age of 35, and my second trimester screening was perfectly normal. We anxiously waited for our Ultrasound, it started off normal enough, chit chat with the ultrasound tech, awwwing and ooohhing over the cute profile picture of our son. The tech went to get the doctor to give us our results. The doctor entered the room, and suddenly the atmosphere shifted, it went from a regular appointment to an atmosphere I can only describe as intense, almost frenzied. The doctor wanted to double check some of the images, and started scanning. Suddenly phrases like “Does he have a nasal bone?”, “Does he have a palate?” started to be asked. I was in complete denial, and thought to myself, “what a stupid question! Of course my baby has a nasal bone!”
Finally the doctor was finished, and she informed us that our son had a AVSD heart defect. He would require surgery at around 6 months of age. She also informed us that with this heart defect comes a significant likelihood of our son having down syndrome (I believe the statistic was 30%). I’m not an overly emotional person, I didn’t cry. However my mind started whirling, and nothing she was saying was being absorbed. She went over our options with us, and asked us how we would like to proceed. My husband stepped in and became my advocate, stating down syndrome was a non issue, I will forever be grateful for the way he stepped in, and spoke up, and his assertiveness.
We decided to do a NIPT (Non Invasive Prenatal Test) to see if our son did have down syndrome. It was a 10 day wait for the results. I would like to say that I handled those 10 days with grace, and acceptance. However I spent those 10 days googling images of ultrasounds of babies who had down syndrome, comparing my ultrasound to those. I had never known a person with down syndrome, and all I could picture was the exaggerated picture illustrating features of down syndrome that I stumbled across while searching the internet. When we finally got the results, the genetic counselor invited me to come to the office and talk to her, and get information. She was wonderful, she was matter of fact, she didn’t say she was sorry. She gave me a very helpful book, with tons of pictures of children with down syndrome, and full of useful information. I was struck with how beautiful the children in the book were, and for the first time I felt a glimmer of feeling like things might be ok. My pregnancy continued, filled with lots of appointments, ultrasounds, fetal monitoring. On November 25th my labor started (4 weeks early), and after a rough labor that resulted in a C-Section Henry Roswell Fafinski made his appearance at 9:20am, weighing 7lb 15 oz, perfectly pink and crying. We held him for a minute, gave him a kiss and he was taken to the NICU for monitoring. We were on cloud nine, he was here, he was as healthy as could be expected, and he was adorable.
However, later that day we hit our first bump in the road. He began to throw up green bile. He didn’t have a poopy diaper. As the days passed he did not get better, in fact he seemed to be getting sicker. He had a tube in his nose to suction out the contents of his stomach, he was on IV nutrition. His belly bloated, and he was uncomfortable. After several days of this the doctors suspected Hirschsprung’s disease. A biopsy confirmed this, and at three weeks of age our baby had surgery to place a colostomy bag. We remained in the NICU for three more weeks trying to get Henry to eat, and grow. Because of his heart defect he was too weak to eat, and we brought him home with a NG tube, and did tube feeds at home until he was strong enough for his heart surgery.
Handing our baby to a surgeon for heart surgery was a crazy mix of emotions. It was hope, fear, guilt, sadness all rolled into one moment. Nothing prepares you for seeing your baby when they come out of heart surgery. There are so many wires, and tubes, and your baby is cold and swollen from being on bypass. Henry was expected to be on a ventilator for three days to give his lungs time to rest, however those three days turned into ten long days with many scary moments. When Henry was taken off the ventilator I was allowed to hold him for the first time in 10 days, it was one of the happiest moments of my life, AND he was finally strong enough to drink his bottle and after a few weeks no longer needed his NG tube. He went from the quietest baby who only wanted to be held, lay still, and who spit up all the time to a baby who wanted to eat, and wanted to roll around, and he developed the most mischievous smile, and sparkle in his eye. Our next hurdle was dealing with Henry’s Hirschsprung’s disease. He had his colostomy reversed that December, and we have been working hard since then to manage his Hirschsprung’s disease. It has caused several hospital stays, and we have had to go out of state to get care, but we are hopeful for Henry’s future. At one point I thought having a child with Down Syndrome would be terribly hard and terribly sad. While we do have some unusual hurdles and challenges compared to other families, having Henry as my son has brought be more joy that I can describe. I watch how hard he works, and how hard he tries, and how proud he is when he masters a new skill, and I am filled with pride. I think about everything he has been through medically and I am grateful. Having Henry has taught me so much about life, and changed my perspective in so many ways. I am grateful for the little things in life, I celebrate the small victories, I don’t take a single moment for granted.
In the early days of finding out he would have down syndrome I thought a lot about what Henry would not be able to do, and I mourned. Today I think about everything he can do, and I am in awe. He has the best personality and sense of humor. He has the best dance moves. He rides horses at the equicenter. He can win anyone over with his sweet smile, and enthusiastic wave. He knows sign language, and he is determined and stubborn. He goes to preschool, and attends a integrated class with both special needs students and typical kids, he has friends who hug him goodbye, and enthusiastically greet him. I am certain that Henry’s future is bright.
Oh the places you will go, Henry!
It was a pleasure to do a special photo session with some local kids who have Down syndrome. I am hoping to spread awareness locally in addition to adding my own flair to the campaign, Changing the Face of Beauty.
Our local news station aired the story on Thursday, April 26th to shine a beautiful light on these adorable kiddos and our photo shoot. You can watch the story here.
BETHANY CHASE PHOTOGRAPHY IS A TRUSTED AND EXPERIENCED PORTRAIT PHOTOGRAPHER IN ROCHESTER NY THAT CREATES CUSTOM NEWBORN PHOTOGRAPHY, MATERNITY PHOTOGRAPHY, BABY PHOTOGRAPHY, CHILD PHOTOGRAPHY AND FAMILY PHOTOGRAPHY EXPERIENCES FOR CLIENTS ALL ACROSS THE AREA. BETHANY CHASE PHOTOGRAPHY CURRENTLY SERVES, BUT IS NOT LIMITED TO THE FOLLOWING NEW YORK AREAS: ROCHESTER, WEBSTER, PENFIELD, PITTSFORD, BRIGHTON, PERINTON, FAIRPORT, HENRIETTA, SPENCERPORT, GATES, CHILI, IRONDEQUOIT, GREECE, CHURCHVILLE, MENDON.
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