A Trisomy 18 Warrior
Charlotte’s journey truly began on her diagnosis day. January 2, 2018, I was anticipating heading back to school the next day, but received an unexpected call telling me I had to see my doctor at 3:45 that day. Receiving that call, I immediately felt the sinking feeling in my stomach but tried to remain positive that results from our genetic testing came back and everything would be okay. My sister met me for my appointment since my husband couldn’t make it and we waited what felt like forever in an exam room. Finally a nurse came in and asked us to follow her to my doctor’s office, again the stomach sinking feeling. We sat down and were told genetic testing came back and my daughter had Trisomy 18. Oh, I thought well that’s a relief, I am familiar with Trisomy 21 it has to be similar right? Well, the next words coming from my doctor were I’m sorry, incompatible with life and there are different options. I distinctly remember asking if there was any chance for her and his solemn head shake telling us we may get minutes, hopefully a few hours with her. I walked out, numb, and collapsed right outside the door calling my husband, Nick, sobbing over and over again she’s not going to make it, she’s going to die.
Needless to say, I didn’t head back to work so quickly and was allowed time off to gain some kind of sense of what was happening. Being the planner I am, I immediately reached out to a local organization called Sufficient Grace Ministries (SGM) which helps families with infant loss and life-limiting diagnosis. A week or so later, Nick and I met with SGM and they helped us create a birth plan that included what type of support we wanted and memories we wanted to make with Charlotte with the time we would be given. They attended appointments with us and advocated for us in what we wanted every step of the way. At this time we were still undecided on if we wanted to give birth at our local hospital that had no interventions available or the larger hospital that did include a NICU.
A month or so later, after having more appointments and having discussions with ourselves and God, we chose to give birth at our local hospital and chose comfort care. Through discussions with doctors we were told even if there was a NICU she wouldn’t really be priority due to her diagnosis. So, after hearing that, we just wanted to have all of the time holding and loving on our girl and allow her to feel how much she was loved rather than be immediately whisked away to be placed on machines and maybe made a priority. Once that decision was made, we met with the funeral director and planned Charlotte’s funeral down to the last detail. It was such a strange experience feeling the life inside of me, but planning for that life to be gone...it was very surreal. As we got closer and closer to her scheduled due date, April 4, our SGM doula met with the entire hospital staff as well as a hospice service to make our wants and needs known. Needless to say, there were many at that meeting who did not believe Charlotte would be born alive but were willing to listen to our doula and give us what we wanted when it came to Charlotte’s arrival.
Finally, April 4 arrived and in the early hours of the morning we headed to the hospital to prepare for my C-section. My SGM doula was there capturing our delivery in photo and video, our loved ones were there waiting in the waiting room and Nick was by my side as Charlotte entered this world to the sound of the Beach Boys at 8:17 a.m. Our priest entered so quickly and baptized her that I missed it, but when he poured the holy water on her head she cried! Our girl, who wasn’t supposed to survive birth, was breathing, crying and letting us know she was here. Being wheeled back to my room, with Charlotte in my arms, I remember seeing Nick in the waiting room, hugging and rejoicing with our family. Immediately we had everyone come to the room as we wanted everyone to begin making memories with her. Pictures were taken, hand prints and foot prints were made, Charlotte was dressed in the most beautiful dress made from my very own wedding dress thanks to SGM. That night, I refused to let her go and stayed up the entire night holding her in complete disbelief of the love I felt for this tiny fighter.
As the next couple of days continued, it was becoming more prevalent that Charlotte was a fighter and we would be taking her home. We were totally unprepared and lacked anything that is necessary to care for a baby at our house, but of course our family and friends helped us out. Saturday, April 7, we brought Charlotte home on hospice care. Hospice came to our house to discuss with us and brought all of the “comfort medications” we could administer and oxygen supplies. That first month was hospice check ins and doctors appointments reminding us what would happen when “it” happened, but also so much love and joy. Towards the end of the first month we headed to see a cardiologist, as during pregnancy it was noted Charlotte had some heart defects. The appointment went well, but a few days later just as Nick had left for work Charlotte turned blue and went limp in my arms. Screaming her name and smacking her back she finally came to, Nick came home and we rushed back to cardiology. So began her first of a few hospital stays.
That first hospital stay we learned about many medical complexities Charlotte had. She was admitted with pneumonia and a UTI, but was needing an NG tube because she was labeled failure to thrive as well as needing support from oxygen and a bi-pap due to heart and lung issues. This stay would last a couple of weeks and included team meetings to decide what we wanted for Charlotte’s life. Our cardiologist was and still is one of our biggest advocates in making sure the entire team knows our wishes, which is for Charlotte to have the best quality of life possible. Not only were medical team meetings happening, but Nick and I had our own team meeting, as well, deciding that he would stay at home with Charlotte and be a full time stay at home dad. This was largely in part to my crippling anxiety that I would be alone with her if “it” happened or something happened in general. I just could not get past that moment that led us here to this long hospital stay. Eventually we were able to bring her home again, not on hospice, but on nursing services because she was beginning to thrive having her NG tube, oxygen and bi-pap. The stay at home didn’t last long as Charlotte began struggling to breathe the next night, and we ended up back in the PICU for a few nights to reconfigure her bi-pap settings.
Her first year, Charlotte began thriving and showing so much growth and progress with the help of Early Intervention and her team of doctors. Her list of specialists continued to grow and we began meeting about more issues such as kidney reflux and bladder issues. By her first birthday, she was scheduled for a G-tube surgery but became scarily sick again ending back in the PICU over her first birthday. She had another UTI and respiratory infection that almost led to her needing intubation, but in true Charlotte fashion she pushed the issue just to the limit where it didn’t need to happen. Finally after a week's stay, we headed home and again she showed that she was here to fight and thrive.
Charlotte is now four and thriving! She tried out pre-school at the beginning of last school year, but after only three days ended up in the hospital for a week; so, she only goes to the school for therapies. Charlotte still utilizes oxygen and a bi-pap but is only utilizing them while sleeping or when she is sick which is a huge step. She no longer aspirates so she has begun feeding therapy among her other therapies and we are hoping to incorporate some oral feeds more often now. There are a lot of tools in Charlotte’s tool box other than her oxygen, bi-pap and feeding pump such as a wheelchair, AFOs, stander and back brace. We were even lucky enough this past fall that the community we live in helped us raise money to put a down payment on an accessible van which makes our lives much easier and she finally enjoys car rides! Charlotte also continues to get her weekly checks from her nurse and appointments scattered throughout the year, which have become further and further apart! Even with all of that, she continues to thrive, radiate so much love and be her sassy self no matter the situation.
This whole entire journey with Charlotte, so far, has taught me to take time to experience each and every moment with as much joy that I can and know that we all have a purpose that is bigger than we may ever know. There are moments that I become so overwhelmed with emotion that we have made it this far and we are so blessed to be able to share even the smallest moments with her. We are grateful for everyone who is and has been involved in Charlotte’s journey so far and can’t even begin to thank them all.
It is important to note for those unfamiliar with the Trisomy 18 community that these children are worth it. They are not suffering but thriving and living life to their fullest extent each and every day thanks to their loving families and those special medical professionals who see their worth; although, there are still some who will refuse treatment for our children which is very disheartening. When we began our journey we only heard the worst of everything, but chose to believe that Charlotte and God would provide the guidance we needed and here we are: a part of a community that loves and supports us from near and far proving that we are all worthy and our stories are our own to create.
We have been blessed with the best medical team at Nationwide no matter if it is a PICU stay or a normal check-up. All of the specialists that we have acquired through Nationwide and the doctors and nurses that have been a part of her care since she was a month old have done nothing but make sure her life is valued. We are grateful for the care they take each and every time they see her to make sure she is thriving and receiving the best care. Not only do they look out for Charlotte, but they also look out for us helping us understand what is going on so we can work with them as part of the team for the care of our daughter. They want to listen to us and take what we have to say into consideration when we have team meetings or appointments that require a change or celebration. Charlotte would not be where she is today without the care she has received from the many nurses and doctors at Nationwide and we could not think of a better place to take care of our girl. We are grateful each and every day for her team and will never be able to find a proper way to thank them all enough.