When a mom -to-be receives a CHD diagnosis for her baby, questions and uncertainty swirl. Laura Carpenter shares, this week, how her baby’s Truncus Arteriosus diagnosis affected her perspective on baby showers.
I remember reading an advice column many years ago. Someone was seeking guidance about her struggle to attend a friends baby shower after a pregnancy loss. I remember thinking that was selfish of her to not attend and probably only fed her grief.
Oh how time and life experiences round the rough edges.
I am now the one who hesitates at the thought of attending baby showers, even as I’m most genuinely excited for babies-on-the-way. Sometimes I accept the invitations and I attend. Other-times I forgive myself and excuse myself.Gwenyth, my heart baby was born with a heart defect called Truncus Arteriosus on St. Patricks day in 2010. She passed away when she was two months old. Baby showers are hard for me now.
When I do attend baby showers, it’s not just the absence of my baby that can be magnified, it’s the memory of the baby shower that I didn’t have, that often summons the ever present heartache to the surface.
If I could do things over again (how often I tread this path in my mind) I imagine the baby shower I wish had for Gwen.
If I could do it over again…I would say YES when my friend offered to plan a shower instead of deciding it was awkward to ask people to attend a celebratory event when her survival to birth was uncertain. I would decide to celebrate her life as given – her life as it was, already deeply a part of ours and Gwen already much-loved in our hearts. However, I would not want anyone to pretend everything was okay – but rather to be there with me, to be present and allowing for all the range of emotions that may come at such “type” of a of baby shower. They could be there to witness her story unfolding and her life as given. They would be part of her life story.If I could do it over again…I would use her baby shower as an opportunity to share the details of her diagnosis and begin spreading CHD awareness then and there (this is my hind-site 20/20 feeding my vision, so of course I’m a well-versed CHD advocate at my HeartBaby shower in this scenario). I’d share the stories of new connections I made with other mom’s expecting CHD babies. Everyone would hear about the CHD survivors that live right under our noses and be well aware of the HOPE that exists for heart kids. They would would all leave knowing how underfunded CHD research is and, through my crystal clear, 20-20 hindsight, I’d share a special “HeartBaby Registry” with them which would offer guidance on the “baby stuff” needs of a heat parent.
This special list would help everyone know which baby items would be most useful for hospital life. They would serve to bring a little sunshine and warmth to some of the lonely times caring for a baby in the hospital as I would remember the shower and think about the person who gifted it to us and was rooting for Gwen.
From the unfair vantage point of hind-sight, I wish I had told my friend, YES, please plan a shower. The reality is, my family and friends would have been honored to celebrate Gwen with me, even it was a different kind of baby shower, perhaps a little more heavy and less light and giggly than most. And what’s more – it would have given us one more very special memory of her life to cherish.
My volunteer work within PCHA Virginia this past year has centered around completing our prenatal care package for families like mine, who learn their baby will need open heart surgery early in life. In this “Conquering CHD kit,” PCHA offers guidance for parents regarding what questions to ask their care team, directs them to trusted sources online and shares stories of CHD Warriors that inspire HOPE. There is also a special page, created partly in response to my relentless hindsight about a missed baby shower. With anecdotes and lists, the page offers suggestions on what to pack for the anticipated hospital stay. I hope it will help families get a confidence-boosting glimpse of what caring for a heart baby in the hospital looks like. And, with this in hand, I sincerely hope families facing a prenatal diagnosis will embrace the opportunity to have a baby shower for their heart child and will even find themselves having fun creating their registry, feeling empowered as they know exactly what to ask for as Heart Parents!
Laura, originally from the Hudson Valley area of New York, lives in Harrisonburg, Virginia where she met her husband, Myers when they were undergrads at James Madison University. Their heart-healthy kiddos are Lillian and Arthur. Their middle child, Gwenyth was diagnosed prenatally with Truncus Arteriosus. She was born in March, 2010 and had open heart surgery when she was two days old. After about one month of enjoying life at home Gwen passed away from a sudden overwhelming sepsis (Neonatal Alloimmune Neutropenia is suspected in her sudden illness.) Gwen’s life has inspired Laura to stay involved with the CHD community. She is the President of the the Virginia chapter of the Pediatric Congenital Heart Association and is passionate about helping parents find strength for this journey, confidence in their role as their child’s advocate and connection with other CHD families for invaluable sources encouragement and education. She teaches art part-time at a small private school and enjoys gardening, hiking and spending quality time with friends and family.