Our Story

Before I formed you in the womb I knew you. Before you were born, I set you apart.

-Jeremiah 1:5

My husband Tim and I were ecstatic when we found out we were expecting. We had been married almost 3 years and trying to conceive for several months when we were blessed with a baby and our little miracle. So as all parents do, we anxiously began to share and spread the exciting news that we were expecting and due January 7, 2017.

Now I am the type of person that works well with a strategic plan, organized schedule and checklists. So of course, being the organized and strategic person that I am, I began to start planning and preparing for our new little arrival. Weeks into the pregnancy we had already printed out our baby check list, met with our financial planners, read 3 baby books and I was already mapping out my maternity leave and time I would need to take care of our bundle of joy. At the time our biggest decisions were where to take our child to day care, when should we start painting the nursery, or what maternity classes should we sign up for? Looking back now I wish those were the only big decisions my husband and I were faced to make.

When you are faced with hard times, it is funny how minuscule the day to day things become that you used to worry about. Although it is difficult to understand what each and every person goes through throughout their life, we all are faced with trying times. I think in these moments we learn how strong we are and what we are really capable of. Hard and trying times not only help you put your life into perspective but are not moments you necessarily jump to share with your friends or post on social media.

My husband Tim and I are not always open or always share what is going on in our personal lives. The hardest part of this journey for us not only has been the doubt in confidence in ourselves to make the right decisions but also how to handle the questions of those that ask about our baby girl. So that is the sole reason I started writing this blog. I thought it might be easier to process our journey, in hopes that it will help us open up and share our little story to those who have similar experiences or those who will experience what we are going through.

The Day Our Lives Changed Forever

Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. In all your ways know, recognize, and acknowledge Him, and he will direct and make your paths straight. 

-Proverbs 3:5-6

Our second ultrasound for Baby Brown was at 20 weeks on August 15th and we both had decided to keep the gender reveal a surprise. We planned to have the ultrasound technician to write the gender and conceal it in an envelope for the big reveal the following weekend with our families. We were so excited to finally find out the gender, but really all we cared about was that our child was safe and growing healthy.  As we looked at the first real pictures of our baby, the technician mentioned that she saw possible fluid in baby's brain and it looked as though she could have a dual filtration system or two ureters in one of her kidneys.

   

I immediately had the strongest gut feeling that something was terribly wrong. There was something that she was not telling us as she mentioned she would be referring us to the Women's Institute of Charlotte to receive a more detailed ultrasound. Tim and I discussed it and decided to proceed with our gender reveal party as planned that following weekend. Our family was planning on coming over to find out the big reveal and of course we wanted to find out whether it was a boy or girl, even though in the back of our minds we were worried. The only thing we cared about at this point was that our baby was safe and healthy. After 20 weeks of anticipation, we found out we were having a little baby girl! We were officially becoming a family of 3 and blessed to find out we were going to have a daughter!

I became so overwhelmed and excited about planning for our baby girl's arrival. We started to design her nursery, brainstorm possible names and think of all the great memories we would share that I almost forgot we were set to schedule another ultrasound. After 2 weeks of waiting and agonizing over what could possibly be wrong, I received a call at work at 4:00 p.m. from the Women's Institute to schedule our appointment. They had just received the paperwork from the Doctor and were so gracious to fit us in the following morning at 10:00 a.m.

We never knew that on that day our lives would forever be changed. What was planned as a routine ultrasound turned into a four hour appointment with multiple ultrasounds, consult by a fetal surgeon and genetic counselor, and an unplanned amniocentesis. On August 25th, my gut feeling was confirmed and our biggest fear was realized. We sat in a room with our ultrasound technician, genetic counselor and fetal surgeon and learned that our baby girl had several development anomalies.

As we sat in this hospital consult room, nervous and waiting to hear the news, they first started by asking us what we thought was wrong. Tim and I explained that although we were not given much insight or information from our first ultrasound, we thought she had possible fluid in her brain and maybe a dual filtration system in one of her kidneys. The Doctor and Fetal Surgeon looked back at us both and said unfortunately I am sorry to tell you that there is a lot more to it than that. I remember Tim and I looking at each other and thinking this could not be happening! I can still remember the pit in my stomach, the look in his eyes and the expressions on everyone’s face in the room. It wasn’t difficult for me to tell by everyone’s sad demeanor that this news was not going to be positive, but I turned to her and said okay let's start from the top.

The Doctor began to start from head to toe of all the markers on the ultrasound that stood out to her as concerns. First, our baby girl's brain was not as developed as it should be for a 23 week old baby. Her brain detailed more of a 15-16 week old brain with partial development of nerves in her corpus collasum and cerebellum. They also were unable to detect the optic nerves in her eyes and her lenses appeared to be foggy and unclear. Then they proceeded to tell us that she had a small hole or septal defect in her little heart. Also, looking at her kidneys, she did have a dual filtration system or 2 ureters in one of her kidneys which you can live with and can be perfectly okay. As for physical features, her chin showed to be underdeveloped and there was a possible abnormality in her hands as her thumbs looked to be lower than they should on either hand.

After hearing the diagnosis, our Genetic Counselor began to speak about all of these small defects being caused by something greater. Now, Tim and I both knew when the Genetic Counselor walked in the door that something must be really wrong. She began to ask if we had ever heard of Trisomy 13 or 18. Of course we had heard of Genetic Chromosomal Anomalies such as Trisomy 21 or Down syndrome but had both never heard of Trisomy 13 or 18. They proceeded to explain that our baby girl had several development anomalies that resembled one of these trisomy conditions. So just to make sure they asked if we would be up for having an amniocentesis done sometime soon. I simply blurted out, let's do it right now! I could not wait another week to see what was going on with our baby girl! So we proceeded with the amniocentesis and left the office knowing that in 2 days we would finally know the results and understand what we were taking on.

Love Doesn't Count Chromosomes

May the God of hope fill you with all joy and peace in believing that by the power of the Holy Spirit you may abound and be overflowing with hope.

-Romans 15:13

Of course as we left the doctor, Tim and I were experiencing a whirlwind of emotions. It was too much to comprehend so we decided to both take the rest of the day off from work and go home to process what we had just heard. We had turned our phones back on and had a number of messages from our worried families wondering why they had not heard from us yet. We both decided to invite our family over to the house to talk with them face to face and tell them exactly what we learned from the doctor.

For two days we waited to hear the diagnosis and were hopeful and praying for a rare chance of good news. On Saturday, August 27th we received a call from our Genetic Counselor, Jean, that our baby girl did indeed have full Trisomy 13. The term "trisomy" refers to having the presence of 3 chromosomes instead of the usual 2 in that particular designated pair. Our baby girl had 3 full copies of her 13th chromosome known as Trisomy 13 or "Pateau syndrome." So instead of the usual 46 chromosome genetic makeup she had a total of 47 chromosomes. To us that just means that she is extra special but, based on the published data, a baby with Trisomy 13 is sometimes referred to as “incompatible with life.”

Trisomy 13 is a genetic condition which occurs in 1 in 20,000 births. A lot of times these conditions cause miscarriages and parents do not even know the reason why. The major complications of Trisomy 13 involve a predisposition to congenital malformation or birth defects, an increased mortality rate, and developmental and motor disabilities in older children. Although most children die in utero, there is also a 10% chance that infants born with Trisomy 13 will live to be age 1, with approximately 80% passing away within the first month of life. Infants born with Trisomy 13 have a recognizable pattern of physical features that often allow health professionals to make the diagnosis. Of course there are hundreds of children out there that have defied the odds and statistics and are living full lives! 

God Has a Plan

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

2 Corinthians 4:8-9

Following our baby girl’s diagnosis we were asked the question how do you want to proceed from here? Do we want to continue with this pregnancy? I could not believe that we were being asked this or that it was an actual question. Without hesitation, both Tim and I responded absolutely! Looking back now, I understand this is a question that medically has to be asked but at the time I was completely taken off guard. How was this decision one that we were supposed to make? Tim and I both firmly believe in every way that this was not our decision to make. We believe we should let nature take its course and that our baby girl was created exactly in the form and way God saw fit. Nothing could be a greater gift from God than being blessed with a child. Tim and I both know she was created for a specific purpose and reason, that she is already a blessing, and more importantly that He has a plan for us all.

Taking it Day by Day

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Jesus Christ.

-Phillipians 4:7

I believe the struggles in life are just part of the journey that helps you realize just how strong you are when pressed on every side. Each and every day continues to be a learning experience as we continue to piece together some of the puzzle pieces of our journey. Our day to day lives continue to be filled with doubt, questions, weekly doctor’s appointments, meetings with palliative teams, cardiologists, neonatologists and any specialists that you can think of. The norm has turned into conference calls with doctors or financial advisors on the way home from work or coming home from work to research Trisomy 13 and the birth plan that is best for our baby girl.

Another reason I created this blog was not only to share a piece of our little story, but also to say thank you to all of those who have reached out to us during this difficult diagnosis and those that continue to help us through this trying time. We are so blessed with a strong support group of colleagues, doctors, friends, and family. It is your encouraging words and strength that continue to help us stay strong and know that we can get through this.

Tim and I both know that God would never give us more than He thinks we are capable of. We both know and understand that life as we know will be different. We have not only accepted that but know our lives are about to change for the better. We continue to strive and learn a little more each and every day about our daughter and about Trisomy 13. We are looking forward to nothing more than meeting our baby girl and the day we can hold her in our arms. This is what keeps us going, this is what helps us persevere, knowing that she is going to defy those odds and statistics and be our precious little miracle.