If you are a parent and have been blessed to have a typical pregnancy and a healthy little one, may you take every word to heart and never take your precious baby breaths or tantrums for granted…
The Beginning of Our Journey
We want to shed some light on our pregnancy journey/testimony so here it goes… Almost 2 years ago during a well-woman’s exam, I asked my OBGYN to make sure all was well from a reproductive standpoint- by doing some additional lab work. I learned my ovarian hormone level was measuring low in the Spring of 2016, and to be retested a few months later. During those next few months I traveled the world personally and professionally including spending a good amount of time in East Africa.
We had considered possibly starting a family later in 2017 or early 2018. Full Disclosure-when I say family- I mean possibly one and done, heck before I met my hubby, Antoine, being a mother wasn’t on my radar. I just wanted to focus on my professional goals. At the beginning of 2017 I was retested and my levels were still low. I was then referred to a fertility specialist. I visited the specialist on Wednesday, February 1, 2017, and he was a little concerned with my levels, and wanted to make sure all was well. I was scheduled to have a procedure the following weekend.
That same evening, my youngest sister stopped by and randomly asked if I was pregnant. I told her no and provided info from the fertility specialist. She brushed it off and said oh okay– well I had a dream that you were pregnant with a baby GIRL and you delivered her with a head full of hair- she was beautiful….your delivery and recovery were a breeze- More on this in another posting.
Fast Forward, on Sunday, February 6, 2017 I found out I was pregnant!!!!! I went from not being sure if I was fully ready to be a mommy to completely ecstatic. I ran all over the house trying to find Antoine (he was in the basement) to tell him- we were indeed pregnant!!! God had delivered a miracle to us and we didn’t need any specialist. We shared the news with our family when I turned 12 weeks- April Fool’s Weekend! 🙂
Mother’s Day weekend I turned 18 weeks, and believed we were far enough in the second trimester to publicly reveal we were expecting. I made the announcement on social media. We were so stoked!
FAST FORWARD…Our Faith Tested
On May 30, 2017, at our 20 week/5 month anatomy scan OBGYN appt., we were advised that our baby looked to be measuring a little bit behind. We didn’t think much of it. We asked the tech to put the baby’s gender in an envelope as we didn’t want to know right away and would reveal at our baby shower in Memphis (my hometown) set for July 8, 2017. My OB immediately referred us to a renowned maternal fetal medicine (MFM)/high risk specialist. We had an appt. on June 1, 2017 that was forever life-changing.
At this appointment, we had a level 2 ultrasound. The sonographer was really sweet and took detailed measurements of our baby. We learned her hubby is an Ole Miss Alum as well. She seemed to be very concentrated around our baby’s chest area. She then asked the doctor to come in and he looked once more and took measurements of the baby’s chest. The room felt eerie as he was looking at the baby’s chest, I immediately burst into tears and the doctor said, I am sorry but your baby has a lethal skeletal dysplasia that is not compatible with life- Short Rib Polydactyly Syndrome (SRSP).
Our baby’s chest area wasn’t wide enough for the lungs to be able to grow and sustain life outside the womb. His recommendation was termination. He thought more than likely this disorder was a sporadic gene mutation, and it likely wouldn’t happen again if we tried to get pregnant a second go round.
The room seemed so small and cold, I remember looking at Antoine and he was trying to be strong for the both of us. All I wanted to do was get out of that office/hospital. We made it to the car and I just sobbed and sobbed in a way I never had ever in my life. I couldn’t believe what we had just heard come from the doctor’s mouth. I am 5 months pregnant- I have a whole baby that is kicking and moving. June 1, 2017 was supposed to be the date our Memphis shower e-mail save-the-date was set to go out. The invitations would be mailed the following week. I immediately had to put that to a halt and inform my best friend- don’t send any emails or invitations!
I couldn’t process the news. I felt like I was in a fog. We were advised to visit INOVA Fairfax hospital and meet with a genetic counselor the next morning. On Friday, June 2, 2017, we saw one of the most sweetest and compassionate genetic counselor and fetal care team members. They provided professional advice related to our initial diagnosis and provided our option(s) to terminate or maybe carrying to term with little to no expectations of life. We were informed there was an option to prevent the baby from suffering by stopping the heartbeat before the procedure- I literally balled my eyes out hearing those words- it was too much to digest. We might get an hour or two at best with our baby if we carried to term. We were just shocked.
We left the office and got in the car and literally cried our hearts out in the parking garage. There was no hope for our baby to live. There were a flood of tears it seems. Our hearts couldn’t bear the news. We were devastated. How could this be- we were having a great pregnancy and now this news. I hadn’t even had much morning sickness. At the 12 week ultrasound our baby appeared just fine along with cell free fetal DNA genetic testing. Nothing made sense. We just wanted to go and hide from the world.
That night, Antoine and I decided we had to know the gender of our baby since we wouldn’t have long to share life with him/her. When Antoine opened the envelope and it said Girl- I cried harder because I felt like God had played a cruel joke on us. How could you give us life and then want to take it away. We had always wanted a GIRL if we were going to be parents. That night, we listened to her beautiful heartbeat on the Doppler we purchased in our first trimester. That same night, we decided to name her Nia Alexandria. Nia means purpose or will in Swahili. Alexandria is the feminine for Antoine’s middle name- Alexander which means defender of man.
I couldn’t understand how God allowed my sister to deliver us pregnancy news before we ever knew that life had already been created in my Womb. HOW GOD and WHY would you be so unkind to us. COMPLETELY HEARTBROKEN was an understatement.
We decided if we didn’t have long with our baby girl, we needed to see her face. On Sunday, June 4, 2017, we had an appointment for an elective 4D ultrasound. It was a beautiful session- seeing our baby girl on the huge television screen filled our hearts with joy and our eyes with tears. We even recorded Nia’s heartbeat on this cute heart-shaped recorder so that we could always hear and remember her. We would know how strong of a heartbeat she had if God wanted to take her away so soon. She looked perfect- so how could the doctor’s diagnosis be true.
We left the place, and as we were driving, God placed a close friend of my mine on my heart to call who had been through a different devastating prenatal diagnosis. After talking to her, she recommended a second opinion with her MFM doctor. The doctor squeezed us in because she was headed on a medical mission trip overseas later in the week.
On Tuesday, June 6, 2017 we met with her and along with her genetic counselor. We were informed our first MFM specialist was a scholar in this area. Her genetic counselor showed us books on his research. We didn’t care what kind of scholar he was, and didn’t care how many books he had written especially after receiving such unthinkable news.
After another level 2 ultrasound, she confirmed the same diagnosis, SRPS and advised to terminate. I cried again uncontrollably. She asked if we wanted to complete genetic testing while we were there, and at that point we didn’t have much else to lose. I opted for an amniocentesis not knowing what to expect, which was actually a blessing. I knew it was a huge needle and had risks, but tried not to think about it. I completed the test, then Antoine and I had blood drawn. The genetic counselor provided more information on genetic testing, specifically the tests that would be run to confirm Nia’s diagnosis. After leaving the office, I cried again like it was my first time hearing the news. I just couldn’t contain myself. Antoine kept his composure at least for the time being.
Contemplating….What to Do???
Antoine and I were faced with a big decision on what to do. We were literally lost and initially felt like our only option was to terminate based on the expert opinions. This was a surprise yet VERY MUCH wanted pregnancy. Yes we are Christians and believe in miracles, but when the top professionals advised our baby WILL NOT live, we didn’t know what to do.
Our second MFM doctor mentioned she saw a couple endure the same diagnosis, and advised them to terminate because it’s too much to bear physically, mentally, and emotionally. They decided not to do so. She said as parents they held out hope that their baby can somehow survive. In the end, these parents endured unthinkable heartache and pain because the baby did NOT live. With that information, we initially thought oh no we can’t endure not being able to bring our baby home. That just seems unbearable; unimaginable. Maybe termination is our only option.
Making the Calls- The Appointment
With the information provided to us, we decided okay let’s see what would be the procedure to move forward with termination. The genetic counselor from the second opinion practice provided us two options on where we could terminate. When termination was mentioned by our first genetic counselor, we informed her that I would like to be induced because we would like our baby to come into this world in a dignified way. The least I could do was go through labor and push our baby out. I sobbed even thinking of this process. I was in such a fog that my brain hadn’t quite registered that termination meant abortion of our wanted baby.
Both genetic counselors worked together to make initial calls to my insurance company and work with a hospital and clinic. I also, made a call to my insurance. I found out that my insurance would not cover such a procedure unless it was high risk to me or because of rape or incest. We were advised a letter of medical necessity could possibly overturn a denial. A letter of medical necessity was written to appeal the initial decision, and again denied. If we were to terminate the cost would be $4,000-$10,000. We were in shock and time wasn’t on our side. There were gestational deadlines to make a decision. We only had a week to decide for any procedures in Virginia and for Maryland we only had an additional couple of weeks to decide. I followed up with a clinic and made THE appointment for late June.
I just couldn’t contain myself. My days and nights were just unbearable. There were days I cried so hard, and couldn’t get out the bed or want to eat! I was pissed at life, our Creator, and the cards that had been dealt to us. I didn’t want to eat or take my pre-natal vitamins anymore! Antoine was my rock. He made me food, administered my vitamins, and encouraged me to try and get out the house. I didn’t want to leave home or see anyone. For the first time in my life, I had become a recluse.
I did manage to call another good friend that had been in my shoes. She was so helpful, open, and honest. Talking to her really helped to clear my mind even for a moment.
I had plans to travel to New Orleans for my linesister/sorority sister’s wedding that weekend, and Antoine was heading out of the country. I really didn’t want him to leave me. I just didn’t know how I would gather strength to be around people and have a sense of joy and happiness. With some prayer and deep conversation with one of my closest LS, I decided to take the trip. It was a blessing to be in the midst of my other LSs and sorority sisters celebrating love and happiness. However, I dreaded returning to my reality.
Fast forward to the next week, Antoine had returned from his trip, and I asked him if He had heard from God or given any signs on what we should do- time wasn’t on our side. He said nope. I personally didn’t have an answer, yet I didn’t have peace about THE Appointment we made. That night Antoine dreamed that I was waddling and he had to help me get around. He immediately told me the next morning, and we believed that was our sign from God to carry our baby to term!!!!!! At the time it was still hard to push forward daily knowing that our very much alive baby in my womb, would probably be dead upon arrival or a few hours afterward. It was even harder to continue to smile especially when all people wanted to know was my due date, my baby shower date (that we never had), and if were having a boy or girl…all we could think about was if our due date meant the beginning to the end….
As the summer went along we slowly received genetic testing results from carrier and fetal screening. Testing results normally take about 6-8 weeks. We learned that Antoine (at 6 ft 2 inches)- is a carrier of a very rare genetic skeletal dysplasia, Ellis-van Creveld Syndrome (EVC) that has some similarities of SRSP. My initial screening came back negative for any genetic mutations. However, our carrier screening results were sent for additional testing along with baby Nia’s fetal cells. The additional testing revealed I had a variance of insignificance (this should not be a big deal, right) on the same gene that causes EVC. This variance actually became important in our case. Nia had inherited my unknown mutation and Antoine’s known mutation, which manifested the syndrome in her. My unknown mutation had only been seen in one other EVC case in November 2016.
We learned Nia was initially misdiagnosed with a syndrome that is 100 percent lethal, but her actual disorder is a sub-group of this syndrome that is NOT ALWAYS 100 percent lethal, but yet still has a high mortality rate. Her heart and lungs needed to function okay post-delivery and get through infancy. The odds were still against us.
A Little Bit About EVC
EVC is an autosomal recessive disorder and only occurs 1 in 60,000 births. It can cause short stature (dwarfism), small long bones, congenital heart defects and short ribs/small chests, which can affect lung capacity, and polydactly- extra digits on hands and/or feet. There are very few cases reported globally- only approximately 150 plus. EVC is highly concentrated in the Amish-Dutch population, although seen in non-Amish communities as well. Our case is very interesting because there are very few individuals of color that have been known to have EVC, which is another reason we believe it’s important to share our journey.
There is a 25 percent (1 in 4) chance of having another baby with this syndrome.
Google pics can scare you, but we’ve met some beautiful EVC babies, thanks to social media and been blessed to have our own EVC and Congential Heart Defect (CHD) warrior who is absolutely gorgeous!
On July 31, 2017 we saw our first MFM specialist again. He was happy to see us as our normal OB had been keeping him in the loop. We had initial measurements taken of our baby girl again and most importantly her chest measurement. We learned that although Baby Nia was small- she had growth INCLUDING HER CHEST!!!! He said this is really good news; we just need it to continue to grow. The best news we had received in about 2 months. On that same day however, we learned Nia had a congenital heart defect. I knew it was a high possibility she could have one, but prayed that wouldn’t be the case. Yet here we were. We were referred back to the Fetal Care team at INOVA Fairfax and they immediately called an outstanding Pediatric Cardiologist.
We saw her on Friday, August 4, 2017. She hadn’t previously heard of EVC, but was amazing with great bedside manners. We learned more about Nia’s heart via a fetal echocradiogram. The cardiologist was very thorough yet the information was overwhelming. We learned Nia has an atria septal defect (ASD) – a hole in her heart that will require open heart surgery. Hearing our baby’s chest would have to be open was a lot to take in. After the meeting, Antoine and I felt defeated, I cried again. After gaining hope, we felt like we were drowning again. Then as I got in my car leaving the doctor’s office, Richard Smallwood’s gospel song, Healing came on the radio. That song was a sweet reminder that God can heal and He can show up right on time.
Our maternity care was transferred to another high risk team at INOVA Fairfax that could actually deliver our baby since our initial specialist didn’t deliver babies. The transfer worked out perfectly since we could deliver at Fairfax and Nia would have access to a NICU Level IV immediately following birth.
Our visits with our new high risk team continued to show positive growth of Nia’s chest, and we learned from a second visit to our Pediatric Cardiologist that Nia actually has heart tissue that initially didn’t appear in the her first echocardiogram. This was awesome news because that meant her open heart surgery could be delayed longer than the initial infancy age of 4-6 months, which gives Nia’s heart more time to grow, and increases her survival rate- Praise God!
In the midst of all the doctor’s appointments, we sought grief counseling through a therapist that specialized in post-partum and loss of infants at birth. I even bought two copies of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief. However, I couldn’t finish this book- it was beautifully written yet gut-wrenching reading excerpts from parents who watched their babies die way too soon. Antoine never read his either.
Also, I asked Antoine to call funeral homes and crematories so that we would at least be somewhat prepared for a funeral/memorial service- if needed. If you know me- I am Type A and a super planner- always trying to plan for the unexpected- of course nothing could prepare me/us for Nia’s journey.
PEACE and the Unknown…..
We gained a sense of peace that we knew ONLY OUR GOD could give us in the last 6 weeks or so of our pregnancy journey. The Devil would try to creep in my mind when we would get a little more bit of strength and hope- BUT GOD! Thank you Jesus for it all. Even when Antoine suggested we buy a car seat and stroller about a month before Nia was born- in my head I was hesitant, but I knew God had placed it on his heart. So I agreed to go to BuyBuy Baby. It had taken us at least a couple of months to go to any baby store or section after our initial diagnosis. It would just make me sad- again BUT GOD! HE gave us unspeakable strength!
We still hadn’t prepared a nursery or bought any baby clothes- only the outfit she would be memorialized or possibly go home in. We didn’t want to overwhelm our home with baby items if Nia would never go home with us- hence NO Showers or celebrations- that part still saddens me!
Nia Alexandria made her early debut on September 27, 2017 at 9:26am weighing 4 lbs 4 oz. My due date was originally October 14, 2017- another post coming soon.
We are forever grateful for this journey, despite its ups and down and even heartache. We know Baby Nia has a long road ahead but we are just thankful to be able to hold her in our arms and bring her home. We know as her parents we are faced with many challenges but God hasn’t failed us yet. He continues to give us a ray of hope and sends messengers along the way to encourage us.
The following Bible verses and gospel songs helped me through my worst days- the days I couldn’t get out the bed, the tears that I couldn’t stop, and whenever fear tried or did creep within my mind.
The Lord will perfect that which concerns me. ~Psalm 138:8
For you formed my inward parts, you knitted me in my mother’s womb I praise you, for I am fearfully and wonderfully made. ~ Psalm 139:13-14
Travis Green- Made A Way
Zacardi Cortez- God Held Me Together We pray Nia’s journey will bless others globally. We never imagined such a roller coaster ride, but Christ our Savior built us for the road we are on now!
This blog post is dedicated to many others living in silence because they have been faced with a lethal fetal diagnosis and advised to terminate. Maybe you followed through! It’s never a simple course, and it’s hard to imagine what you will do until this decision becomes your journey in a wanted pregnancy! We pray that you have peace no matter your decision as it’s not an easy one. You truly don’t know what you will do until you walk this journey. We continue to pray for you as we pray for ourselves and ask for God’s strength and endurance. Be Blessed…