During the month of September, Bonsie will feature a brave baby and family who has triumphed in the midst of frightening medical challenges. In honor of NICU Awareness month, we are also giving back to our local hospital, Barbara Bush Children’s Hospital, and donating our babywear to other NICUs and medically complex babies.
Our mission at Bonsie is to educate parents on the benefits of skin-to-skin contact and encourage this healing practice. The design of our babywear is uniquely crafted to make skin-to-skin contact easy for babies in and out of the NICU; we make babywear with a PURPOSE. Skin-to-skin contact is particularly crucial for NICU babies, which is why we are grateful for the opportunity to share these inspiring stories with our readers.
Rachel and her husband, Aaron, live in Texas with their baby, Cosette. Cosette is six-months-old and has multiple heart defects. She will eventually need open heart surgery, but nothing will stop Cosette and her parents from conquering this hurdle.
“We tried to have a baby for years with no success so we just enjoyed life by traveling, playing softball and having friends over for BBQ parties. We lived in the DC area for 10 years where I worked as an adult cardiac nurse and Aaron worked as an Immigration Officer for USCIS. We moved back to Dallas in 2018 to be closer to family and thought the change of scenery would help with our fertility struggles. However, we continued to have issues, so we decided to do IVF and have an embryo transferred to a gestational carrier/surrogate. We felt this would give us the best opportunity for a healthy baby. We were blessed to find an amazing couple that also lived in DFW that wanted to help us.”
After the 16- week scan, Rachel and Aaron learned that their baby girl has several congenital heart defects.
“The embryo took on the first try and a positive pregnancy result came 10 days later! The first trimester was pretty routine and we started to feel a sense of relief that everything was going to be ok. However, our hearts sank at the 16-week scan when the doctor told us it looked like our baby’s heart was pointing toward the right side of her chest. We were referred to a pediatric cardiologist for a fetal echocardiogram and they confirmed our worst fear. The doctor said our baby’s heart didn’t form correctly and she has several congenital heart defects associated with heterotaxy syndrome. The pregnancy was progressing as usual and we wouldn’t have even known there was an issue if it weren’t for the scans and experts interpreting them. We had four fetal echocardiograms during the pregnancy and the team prepared us for a number of different scenarios that could happen when she arrived. We hoped and prayed for the best but there was always fear that she wouldn’t survive or would have such complex abnormalities that her quality of life would be impacted severely.”
Learning about this diagnosis and navigating months of fear and the unknown was not easy, but with a team of support they saw the light at the end of the tunnel.
“We were completely devastated when we learned of her diagnosis and we started telling our family and friends the news. It was hard explaining it and feeling like we had to put an “asterisk” next to the wonderful news because we just didn’t know what was going to happen. I was amazed at the support that was given from so many people that I haven’t talked to in years or even met. It really was a team effort as we carried much of the emotional stress while our surrogate was carrying the physical stress of pregnancy. Since we got the diagnosis early it gave us the opportunity to prepare mentally and I was introduced to a few heart moms that shared their stories. They now have healthy kiddos so it gave me a glimpse that even though it may not be the life we imagined we could still have a good outcome in the end. At first I didn’t want to prepare the baby room, create a registry or have a baby shower but those reasons were based out of fear. I changed my mind and we ended up throwing a ‘Baby Q’ at our house and had a great time.”
Multiple heart defects were confirmed after Cosette’s birth, however, she did NOT have many of the additional complications possible.
“Our baby, Cosette Claire, arrived via C section a few days after her due date on March 3, 2023. Even though she was small, (5 lbs 4 oz) she looked great and she was falling in the best possible scenario that was presented to us. They did a number of tests and scans to learn more about her heart and confirmed she did have a complex heart defect, however, she didn’t have the other issues commonly associated with heterotaxy syndrome!”
Here is an explanation of Cosette’s heart defects:
“She really doesn’t fit a medical definition since her heart has multiple defects. Her heart points to the right side of the chest (dextrocardia) so we joke that she will need to do the pledge of allegiance using her left hand instead of the right! She has large holes in the upper and lower chambers (ASD and VSD) so arterial and venous blood is mixing as it’s pumped out to the body. She also has a narrowing of the great vessel that goes to the lungs to pick up oxygen (pulmonary stenosis). As a result, her oxygen levels are in the 70-80s so we monitor that daily using a pulse oximeter that was provided to us by the cardiologists. We put the result in an app that goes to the nurse practitioners and we have monthly check-ins with the cardiologist for echocardiograms.”
Cosette will need open heart surgery in the future, but for right now she only requires medication.
“We know Cosette will eventually need surgery to redirect blood flow, but so far she’s doing well and is only requiring medicine to help lower her heart rate (Atenolol). It’s amazing what they can do now with surgeries and she has great doctors at Children’s Medical Center Dallas. Her records have also been reviewed by an amazing surgeon at Boston Children’s Hospital for a possible biventricular repair in the future.”
As Cosette grows and reaches milestones, Rachel and Aaron are soaking up every opportunity to snuggle with their baby.
“Cosette is now six-months-old and looks and acts like a healthy baby. She is growing and meeting all of the important milestones, with the exception of requiring more frequent and smaller feedings most likely because she gets tired. Or that could just be her preference! Under normal circumstances, I would probably be more frustrated waking up every 2 hours to feed her at night.
But I count our blessings that she’s doing so well and it just gives us more time to cuddle with her and do skin-to-skin.
She especially loves to cuddle with my husband and she just melts in his arms and on his chest.”
Bonsie Skin to Skin Babywear has changed the way parents dress medically complex babies in the NICU setting. Bonsie's unique design allows doctors and nurses to easily place sensitive medical equipment on babies while keeping them warm, while also allowing for skin-to-skin contact without removing clothing. We offer a range of sizes from preemie to size 6-9 months, as well as footless options, short sleeves, and rompers to accommodate various needs.
It is a privilege to meet these remarkable NICU families and share their stories with you. Working with parents and babies, such as Rachel, Aaron, and Cosette is at the heart of everything we do at Bonsie. We hope to provide knowledge and encouragement to new families everywhere and help as many babies as we can in the process.
“We learned about Bonsie from another heart mom and it’s a great outfit to wear to her cardiology appointments so they can do the echocardiograms without her having to fully undress. It will also come in handy when she does need open heart surgery. I have worries about future procedures, but I don’t want to live in a fearful state of mind and miss out on the joys of parenthood. Cosette is a fighter and she always rises to the occasion, so we will do that for her too!”