Ma’Lanie’s Heart Mission

On April 1, 2020 after several home test I went to the doctor and found out I was pregnant, yes on April fools day! I was excited my entire family was excited for the journey to come. My child was going to be the first grandchild niece/nephew great grandchild and great great grandchild. I was sick from day one morning, noon, night it didn’t matter I was just sick all the time. I had all the genetic testing done found out I was having a baby girl and from testing she was healthy. I however was sick. I ended up in the hospital for a week and on several medications to control the sickness eventually my doctors got it under control and I could enjoy my pregnancy without being extremely sick. At 20 weeks I went in for my anatomy scan, alone because thanks to Covid I was denied the opportunity to have anyone with me. At my 20 week scan the doctors found some concerning red flags with my daughters heart and we were referred for a fetal echo. After the hell of fighting with the doctors office to send me to my preferred cardiologist we finally had an appointment. At 28 weeks we found out that my daughter had some heart defects which would require surgery after birth. My local cardiologist sent us to a larger hospital that has a specialized team that deals with fetal heart issues Duke is 2 hours from home but a great hospital! They called and had an appointment scheduled within a few days. My first appointment was in September of 2020. We went and they confirmed that my baby was in fact going to have some heart problems that would need surgery to fix. At this appointment at Duke we found out that my daughter has several heart defects. Single ventricular heart disease, interruption of the aortic arch, aortic stenosis, and Ventricular septal defect and a plan was made to do surgery shortly after she was born. The remainder of my pregnancy was fairly normal other than the 2 hour drive to a doctor office. I was scheduled to be induced on November 18,2020. We get to the hospital and start the long process of induction. After 36 hours of labor I was not progressing and my daughters heart was not tolerating labor anymore. At 1:45 am on November 20,2020 they decided it was time for an emergency c-section. My daughter made her grand entrance into this world at 2:10 am on November 20,2020 weighing 6.8 pounds. She was beautiful and doing better than they thought she would. The c-section was rough on me as I had issues with my breathing heart rate and blood pressure. I don’t remember much for a few hours and then I went to see this beautiful baby that was mine. Ma’Lanie Rae’Lynn had a head full of black curls and was ready for the fight she was going to have. After a few days of testing on November 23,2020 she had her first of three heart surgeries called the Norwood procedure. Things went smoothly during surgery. Her recovery was hard. She couldn’t eat had to have a feeding tube, was off and on the ventilator a couple of times but finally on Christmas Eve she was moved to the step down unit from CICU and we were heading in the right direction! This journey was the hardest in my life being 19 new mom and no family allowed because of Covid-19. I missed thanksgiving Christmas New Years sibling birthdays for the first time in my life or theirs. In the midst of all of this my papa got sick with Covid and was put in the hospital on January 1,2021. Ma’Lanie came home on January 8,2021 at roughly 8 pounds still on a feeding tube several medications and monitors. But my baby was home! Unfortunately my papa never got to meet the baby he was so excited to meet because he passed away due to complications from Covid on January 15,2021. Ma’Lanie continued to improve. She came off the feeding tube within a moth of being home, she was gaining weight,slower than the doctors wanted to see but she was gaining none the less. She was and is followed closely by her doctors with weight checks every other week and heart echos every week. She started doing things healthy babies due. Cooing,laughing, playing, copying people, eating baby food. To look at her you would think she is a perfectly healthy baby small but healthy and happy. In April it was time for testing for the second of three surgeries. My mother and I packed up and took the trip to Duke for a heart cath, MRI, and echo. The stay was supposed to be a little 24 hours in the hospital then back to our lives at home with family. Things didn’t go as planned and we ended up being in the hospital for four days. Finally we were back home and able to continue life.
On April 23,2021 my mom took Ma’Lanie to her cardiologist appointment in Greenville for a normal check up and echo. That appointment changed everything. My mom was told that her granddaughter was worse than they thought and her heart was not in the best shape to have the Bi-directional Glen surgery which is surgery 2 of 3, but that a heart transplant was looking more like the better option. My mom, stepdad and dad decided to wait a few days to process things before telling me as we were waiting for more details. So after 3 days my parents sat me down and explained what was going on. When we had the testing done at Duke they found more issues with my beautiful baby girls heart. On top of everything they already knew she now has hypoplastic left heart syndrome, extra pulmonary blood vessel, a leak from her tricuspid and mitral valve, and her heart function is not great. It’s not as bad as it could be but it’s not good either. We are looking at a heart transplant no way around it. My family and I have talked about all options and possible outcomes we have faced it head on. We have agreed to do as much as possible with Ma’Lanie celebrate her to the fullest. We had a 1/2 birthday party some may think that’s being extra but to know her story is to know why we celebrated 6 glorious months of her! She had another appointment with the local cardiologist on Monday May 17,2021. Her heart in his words is sicker than she shows and we are starting the testing for transplant evaluations next week and possible ballooning of her aorta and anything they can do to help her heart function increase until we get a new heart.
Getting a new heart for my baby girl means someone else has to loose their baby, that’s a hard pill to swallow. And when I asked my mom how do you pray for that tells me we can’t pray for that, we have to pray for another family to have the strength, courage, and compassion to let their baby go and the love in their hearts to save someone else’s.
We aren’t a family to ask for hand outs or even help for the most part, but now is a time where we need it the most. The medical expenses and travel expenses are going to be hefty. I am a young single mother who can’t work because of my daughters health. My parents have several small children still at home so the burden is heavy. If any of you could find it in your hearts to help out my family and I would forever be grateful. The help given will allow my parents to be there for me and their grandchild without the worries of financial burdens from medical and travel expenses. It will allow me to breathe a bit easier and focus on my daughter.
If you can not help financially please add us to any and all prayer list within your grasp. We believe in the power of prayer! And we know where two or more gather in his holy name there he is too!
Thank you and God bless you all for taking the time to read our story!
Brianna &
Ma’Lanie the heart warrior