I am a heart mom to my daughter Payten Kay who is in Kindergarten. In our free time together we like to garden and do art. Payten has had three open heart surgeries and is doing amazing.
She was born with half of a heart, her right lower chamber (ventricle) never developed. Being a heart mom is a unique and special experience to say the least. While being a mom I am also a Police Detective on an auto theft task force. Working a full time stressful job and being a heart mom to a wild child makes for one stressful experience. I have to help balance those stressors with working out daily (it’s my antidepressant) and make sure to reflect and remember the small things about life.
My biggest strength as a mom would be… showing my daughter constant love and affection and being attentive to her needs and what makes her unique.
I don’t spend a ton of time away from my daughter, I would miss her too much! When I do, I usually will go the gym, a yoga class, wine or coffee with a friend or shopping!
Can you describe your daughters health? How was the diagnostic process? Did you have any warning of her heart conditions?
My daughter was born with half of a heart. Her right lower chamber never developed. Her technical term is Hypoplastic Right heart and Tricuspid Atresia. There was not a diagnostic process for us. I had no clue anything was wrong with her little heart. I had an amazing healthy pregnancy and all her ultrasounds appeared normal. There is a size range of the heart when doing ultrasounds and her heart was never out of the size range. The only way we would have possibly known is if she had a level two ultrasound, which places do not routinely do unless needed. Payten’s birth was short and sweet, she even scored awesome on the APGAR Payten was a few hours old and getting her first bath when the respiratory therapist noticed her lips turning blue. Thankfully a respiratory therapist was giving her a bath and in tune with what that means! He put her in a little oxygen tank hoping her oxygen saturations would rise, when they didn’t’ he knew that something was wrong with her heart. Immediately after that Payten was transferred to UC Davis Children’s Hospital where they specialize in heart related issues for newborns. I was left behind to recover from giving birth but that did not last long. I left twelve hours after giving birth to go be with my baby! We got her diagnostic and six days later she had her first open heart surgery.
How has this impacted your family? What are some cautions you take? What has her having her surgeries led you to be more relaxed about?
(For example I am a FREAK about hand washing but NOT a FREAK about falling, bruising, stitches, etc!) This has impacted our family in a variety of dynamic ways to say the least. I was and still am a super freak about anything. I have suffered some PTSD and still deal with feeling some responsibility. Imagine being a new mom, all the little things you worry and stress about…now add being a heart mom. It amplifies everything!!! Being new parents affect your marriage relationship in many ways double that with having a heart child really takes a toll. Don’t get me wrong, I would never in a million lives change or not want to be a heart mom but it sure changes you! I am not relaxed about anything!
What is her prognosis? How often does she have follow ups?
She had her last “scheduled” surgery when she was 3.5 years old. She just turned 6 and had her annual cardiology appointment and everything looks great. Each heart child is monitored differently and each case in individual. She will have to have some sedated echo’s and hearth catheterization in the future but currently we are all good. You would never know by looking at her and seeing her running around that she had any sort of heart defect!
How has her health challenges impacted your emotions? How did you “keep it together” during surgeries or procedures, or did you?
Emotionally, it has wrecked me. I have a VERY hard time keeping it together. There is a very unique balance to being a heart mom and letting your child do things like they normally should. It is hard to balance that and not raise a kid who freaks out or is scared to do things because of their heart. I have for sure gotten better over the years but that saying “You never know how strong you are until strength is your only option” Stevie (Payten’s other mom..she is lucky to have two moms) has been the rock for this department. Stevie would stay with Payten during the entire hospital stay and helps to support me and doesn’t freak out at all.
How do you talk about her heart with her? What concerns does she have?
I talk to Payten about her heart all the time. Before her third surgery as part of prepping her for it we would actually talk about and do the surgery on her or a doll. I feel her knowing exactly what would happen and what kind of tubes and wires would be on her when she woke up helped prepare her emotionally and mentally. She rocked her third surgery. She was up and walking not even 24 hours later and we were home from the hospital on the fifth day. The average normal stay after the Fontan surgery is two weeks! We try to talk openly about it with her all the time. I feel the more knowledge she has the more in tune with her body she will be. She will then be able to express any chest pain or something possibly related to her heart that we may not be able to see. She doesn’t have any concerns as of yet. She does tell me often “I don’t have to drink my water…or vegetables or whatever else anymore because…I got my heart fixed!”
Do you have any advice to offer parents with a pre-natal diagnosis of a heart condition? Do you have any advice to offer parents with any serious life threatening condition for their child?
What can we do to help support research? Mended little hearts is a great organization that helps support families when their child is hospitalized. Children’s Heart Foundation’s mission is to donate all monies towards actual congenital heart defects research. There are also a TON of Facebook heart mom pages and other ways to support. There are also heart walks, and events. We try our best to spread awareness and be in the know.
Thank you so much for sharing your journey. So wonderful to hear that she is thriving! Your strength is truly inspiring, mama! The week surrounding Valentine’s Day is traditionally Congenital Heart Defects Awareness week. Thank you Melissa for increasing awareness, as 1/100 live births have Congenital Heart Defects. We love those heart kids!