By Smarty Guest Blogger, Shannon B
It’s Thanksgiving in 2005 and our 2-year-old daughter has asked Santa and her “best angel-friend”, Ally, for a baby brother or sister. Already fortunate enough to have an amazing daughter in our lives, we asked ourselves, “What more could we possibly want? Things are great the way they are.”
“Life is like a box of chocolates, you never know what you’re gonna get.” – quote from Forrest Gump.
It’s February 3 and we are at Eastover OB/GYN confirming what a half-dozen purple sticks had told us over and over two days prior. We knew better than to share our news with our daughter as she believed at the time that “keeping” a secret was the same as “telling” a secret. She was getting her wish and we could not have been more happy or excited about our expanding family.
It’s July 7 and I am standing by our car, crying on my husband’s shoulder. An hour earlier we were in the Women’s Institute at Carolina’s Medical Center (CMC) receiving a positive diagnosis of a defect in our unborn child’s heart. The day before we were in for an ultrasound at the OB where an unrelated “shadow” around the heart – from an anatomy screening back in May – had proved to be just that. Nothing to worry about there. But the technician (who has a permanent place in my heart) whose care and diligence in her work continued to look beyond what was on my chart and saw something new that was not right. She told us, “I think there could be a defect”.
As my husband likes to tell the story, WE WERE LUCKY. There are parents who learn of their child’s heart defect in utero that may not feel the way we did, but as a family, we had been given the gift of time to prepare for our child’s birth and subsequent care through Sanger Clinic, CMC’s cardiology group. The doctors, nurses, nurse practitioners, and the genetic counselor were overflowing with information and support. We broke the news to our family who also provided tons of support. We continued with our own research, reading books and pamphlets, searching the web, gathering information and finding support groups online dedicated to congenital heart defects (CHD). Online support groups are wonderful as they cross time and erase borders.
But something was missing. We needed more. We needed the warmth of a person’s voice, the touch of another parent’s hand on ours, the shared tears and even more so, the shared laughter. We knew they were out there – a CHD is the most common birth defect as 40,000 children are born with a CHD each year while 4,000 do not survive their first year. We knew they were in Charlotte, but how do you find them? HIPPA regulations forbid doctors from connecting patients. Anonymity is the norm for most people in forums and chat rooms. We still prayed for finding that connection.
It’s September 27, the day after my birthday, and our son was born. If it were not for his AtrioVentricular Septal Defect (AVSD) he might have been the healthiest baby born that day. Big and strong. The nurses in the Neonatal Intensive Care Unit (NICU) practically arm wrestled over him as he was the only baby that could be held in his unit. After spending a week in NICU he came home and we were still nowhere near finding what we were looking for.
It’s now sometime in June 2007. Our son was 9 months old and we were still looking. One night my husband handed me a copy of SouthPark magazine. We tend to pick up a copy now and then, skimming the pages more often than reading them thoroughly – while renting a $10,000 a night villa on the Amalfi coast is quite intriguing, it’s not really on our list. But this issue contained probably the most important story that we will ever read. It was about a family that had a young child with a CHD! Not only that, but the mother also felt there was something missing in her grieving and understanding and – get this – had recently started a support group, Levine Cardiac Kids (LCK), for people just like us. Lisa McKenzie had answered our prayers.
We began attending LCK after the summer break. We have met some wonderful parents and children. And more importantly our “family” has grown as has our understanding of the needs of a CHD child.
It’s December 3 and our son had his surgery. We benefited from all the wonderful care he received, along with the support, thoughts and prayers from our immediate and LCK families as he spent a mere 48 hours in the hospital following his surgery. Through it all we were truly blessed.
As of today LCK is one year old and making a huge difference in the lives of families and children affected with CHD by providing support, education and awareness. It is officially a program of Levine Children’s Hospital, yet the group is open to any CHD patient (child or adult) and their families, regardless of where treatment has been or will be given. The group meets monthly and features a guest speaker addressing a CHD related topic, an inspirational story by a LCK member, and an opportunity to socialize among members. The group also hosts coffee drop-ins for families in the hospital to come find support by bending an LCK parent’s ear or simply taking a break from time on the floor in their child’s room. Recently, LCK made a scrapbook of our children’s heart stories for the cardiovascular intensive care unit waiting area. The group has also teamed up with the Girl Scouts to create CHD Care Packages full of items that are valued and appreciated in our own hospital experiences. The first anniversary picnic was held in April and was attended not only by member families, but also by some of the doctors, surgeons, and other hospital staff in celebration of the group and of course the kids that they have treated. A charity golf tournament to benefit the group is scheduled for September.
If you are interested in learning more about Levine Cardiac Kids, we invite you to visit the web site – levinecardiackids.com – join us at our meetings on the first Thursday of each month or to drop-in for the twice-a-month coffee break at the hospital.
In closing, life can take us down unexpected paths yet can also reward us when somehow the pieces begin to come together. Looking back over the last two years through the fear, uncertainty and doubt, my husband and I have grown even closer, our daughter has been given the greatest gift of her little brother, and we have met some incredibly caring and inspiring people. Our family is ever thankful for the wonderful care we have received from the people at Eastover OB/GYN, the Women’s Institute, Sanger Clinic, Carolina’s Medical Center, the support of our family and friends and most certainly for the initiative Lisa McKenzie took to bring families like ours together.
If this is what “life is like,” we’ll take the whole box, please.
Thank you for posting about this. Of course, we have a story as well. And I did not know about the extent of LCK. I thought since we were also ‘lucky’ in our problems, it would be unfair to take the support from others who might need more. However, CHDs don’t really ever leave you, and they weasel back into your life when you least expect it. We will be checking it out. Thank you.
Thank you for sharing a piece of you and your family in the hopes of helping someone else. I am going to go home and hug my healthy children and try to be greatful for their messes that were annoying me this morning!
Wow, what a wonderful post. Thank you so much for the information and inspiration. Hopefully, you and Jill can connect at some point. This is exactly why I read CSP every day, genuine people, genuine stories and genuine care.