Families That Inspire: The Wollman FamilySep 25, 2014 09:27PM ● By Hood Magazine
What is Hydrops Fetalis? How did it affect your son? Hydrops fetalis is a serious fetal
condition defined as abnormal accumulation of fluid in at least two different fetal compartments. These compartments, or spaces, can be a collection of fluid in the abdominal cavity (ascites), around the heart (pericardial effusion), and/or lungs (pleural effusion), or generalized edema or swelling of the skin and throughout the body. Hydrops fetalis is not a disease in itself, but rather an end-stage process of a number of fetal diseases. It was noticed on an ultrasound that our unborn baby boy was developing hydrops fetalis and that the accumulation of fluid was severe, thus causing restricted fetal growth and compromising organ function and survival. Renner also has what we call his T21 super powers, Trisomy 21, a genetic disorder commonly known as Down Syndrome.
When did you first find out about your child's diagnosis? How did you decide what to do next? We were followed closely by a perinatologist throughout the pregnancy, where complications were first noted at a routine 22-week ultrasound. With each ultrasound thereafter, more concerns and complications arose as the fluid continued to increase and our unborn baby boy was fighting for life. Brian and I were informed that our baby boy would likely be stillborn and if he did make it to delivery, he would die thereafter as hydrops fetalis is most often fatal. Brian and I prepared Riley and Paisley the best we could, by preparing them to meet their baby brother sleeping. We vowed as a family to honor the journey and we anchored ourselves onto HOPE.
What was your family's course of action? Renner was born by emergency C-section at 35-weeks gestation and was immediately admitted to the Boekelheide Neonatal Intensive Care Unit at Sanford Children's Hospital and placed on full life support. Renner was blessed to have the most amazing medical team that was providing him an opportunity for life, and they honored our special requests as we prepared as a family to say goodbye to our sweet baby boy. Renner also has what we call his T21 super powers, Trisomy 21, a genetic disorder commonly known as Down Syndrome where Renner was created with a little something Extra, a third copy of the 21st chromosome.
Brian and I relied on support from our family and friends to help with our other children so we could be by Renner's side throughout the 6.5 months Renner was hospitalized. Although Renner was not expected to survive, we never gave up HOPE and always maintained a positive outlook that Renner would be granted to stay with us here on this earth. We cherished all the little things we were able to do with Renner by being hands on with medical cares, reading and singing to Renner, and at times we were unable to hold Renner, we made sure he always knew we were there by holding his hand. As we prepared to say goodbye, we were committed to honor Renner's journey by creating memories we would be able to cherish for a lifetime. We were able to bring our own rocking chair up to Renner's NICU room as a way to always have that special memory of rocking our sweet baby boy in our chair. When dealt the heart-wrenching reality of having to stand beside Renner as he fought for life, we learned to dance in the rain and found JOY in the midst of that horrific storm!
Are there any resources you recommend? Always keep open communication with the medical team, ask questions, research the diagnosis and treatment plan, educate yourself and reach out to support groups to find other families who have endured a similar journey and rely on the support from your family and friends.
What advice do you have for other parents? When you are faced with a horrific storm in life and are launched away from your safe harbor, feeling as if you are sinking, weathered and weak, the only way to stay afloat is to anchor yourself onto HOPE. As the storm continues to rage all around you and nothing is in your control, that HOPE will help calm the raging storm within. It is utterly painful as a parent having to watch as your child is fighting for life, but you must learn to be patient and, as hard as it may be, find JOY admist that pain. No matter what the outcome may be, EMBRACE the journey and find a positive in each and every day, no matter how small. Cherish every sunrise, every breath and every heartbeat with a grateful heart!
Is there anything else you'd like to add? By sharing Renner's Journey of Hope, Brian and I are hopeful that it will provide others with a sense of Hopefulness when faced with turbulence. With every heartbeat, is a heartbeat of gratitude!