Nia’s Birth Story

Nia’s birth story started at least a couple of months before she was born…the princess needed a grand entrance so pomp and circumstance was necessary.

I mentioned before, my care was transferred to a high risk team at INOVA Fairfax since the Women’s Hospital and NICU Level IV were in the same location.

Fast Forward to Pregnancy Week 35…

We discussed Nia’s growth and I mentioned the steroid injection I could receive to possibly help Nia’s lungs. He said the shot couldn’t hurt so why not.  He said the next week I could have it as I was very adamant about it. My doctor said I was doing fine and no signs of labor just yet so he approved me for one last mini trip.

I traveled to New York City for work, as my mom held her breath and couldn’t believe I was traveling so far along. Momma I am fine- it’s less than an hour plane ride up and down – my doctor isn’t concerned neither is Antoine.

I was determined to allow Nia to experience life in my womb if she didn’t have long on this Earth. In New York I had some great cuisines and Nia seemed to enjoy as well!

I returned back to the DC area safely.

At my week 36 appointment I had my usual non-stress test and ultrasound Nia was looking good and practicing breathing. I had my first dose of the steroid shot- I didn’t know it would be administered on the backside. The next day I came back for the second dose.

He reminded me to keep drinking lots of water.

Week 37- The BIG WEEK

The next week, Tuesday September 26, 2017, We had two doctors’ appointments- Cardiologist and Maternal Fetal Medicine (MFM).  The cardiologist completed one final fetal echocardiogram on Nia’s heart. The appointment went great and Nia’s heart looked the same. Her main concern was insuring Nia’s patent ductus arteriosus (PDA) closed after birth- so that would be something to watch for. The PDA is an extra blood vessel found in babies before birth and just after birth. In most babies who have a normal heart, the PDA will shrink and close on its own in the first few days of life. If it stays open longer, it may cause extra blood to flow to the lungs, which Nia definitely didn’t need with a smaller lung capacity. After the appointment I advised Antoine to go to work and I could handle my afternoon appointment with the MFM- high risk doctor on my own.

I headed to Chick-Fil-A. For some reason I was craving a Spicy Chicken Sandwich Combo with a lemonade. Antoine actually likes the spicy chicken sandwich- not me! I guess Nia was really craving this sandwich LOL! Nia and I ate good…

Of note-  I was not a huge fan of afternoon high-risk appointments because Nia likes to sleep after lunch- this is no good for a non-stress test!

I arrived at my appointment and then hooked up to the NST monitor- I am so tired- I am sure it’s from my good lunch LOL! The nurse for some reason says I can take a nap- and I agree. However, taking a nap is not ideal for a NST because you can’t successfully hit the button to capture when the baby is moving- high risk pregger mammas will understand. Needless to say Nia fails her NST for the first time since I’ve had to take it. I just shrugged it off she is just sleepy. The medical team didn’t think much of it either and said we will just take a better look during your ultrasound.

During my ultrasound the sonographer did the usual of taking measurements, but particularly for this appointment she kept saying come on baby girl show me your breathing and then Nia did J. She kept looking around, and finally she said let me get your doctor.

The doctor came in and took one quick look and said you have no amniotic fluid, we have to take your baby NOW and it has to be by c-section! We can risk her not having enough oxygen going through the birth canal. I immediately burst into tears. I am not ready for Nia to come yet. She needs more time to bake, her lungs need more time. I have to have surgery…I was in the room alone. He said you need to call your husband now, but we may not be able to wait for him! Wait! WHAT! No you have to wait for him. I can’t deliver Nia alone.

I immediately call Antoine and tell him to get to the hospital immediately because Nia will be delivered ASAP. He is calm on the phone and rushes to get to me. I am prepped to be admitted from the Antenatal Testing Center to the Labor and Delivery Unit. I called my mom and bestie immediately. I cried hysterically. My bestie didn’t’ answer immediately- so I texted call me ASAP. My mom said no you can’t have her now because I am not there! Things were happening so fast- it was overwhelming. I kept thinking I need more time with my Baby God! I just need more time!

I called my bestie around 330pm EST. She didn’t answer immediately and I texted her call me ASAP. She called back and I told her what was going on. She kicked right into action. By the time I heard from her again she was throwing stuff in a bag. She informed me she had a flight out and would arrive around 1145. I said okay perfect I will see you tomorrow. She really meant 11:45pm that night! She was packed with my mom in tow and on the next flight smoking out of Memphis at 5:55pm!!! I couldn’t believe it! She is a wife and mom of two small kids! She dropped life that day- really rest of the week for me and made sure my mom could be there too! Outside of my hubby, she is the real MVP!

After this call, I was wheeled upstairs to the Labor and Delivery floor. I was still in tears and couldn’t believe this was happening. My baby Nia is coming too soon. I kept rubbing my belly- scared at the thought of delivery. What we would it be like? Nothing could’ve prepared me for this type of delivery day. After my arrival upstairs, I completed the registration process. Thank God, I completed my registration weeks in advance of delivery.  That part was a breeze. However, there were so many people coming in and out of my room area. It was insane.

My IV was placed. I really didn’t like where they had placed it on my wrist. The anesthesiologist came to inform me of his part for the c-section and what should I expect. I learned that where i would be poked couldn’t cause paralysis because it’s at the end of the spine where all nerve endings are.

Antoine arrived soon after.

The neonatologist on duty came in to explain what we should expect with Nia because of her syndrome/dysplasia. He was a nice, soft spoken Korean-American doctor. INOVA Fairfax had only seen one other baby in the last FIVE Years with Nia’s syndrome! That baby had a flappy trachea plus cleft palate along with other things that could possibly come with Ellis-van Creveld (EVC)! He said Nia would probably need ECMO or an oscillator because of her lung capacity. I immediately interrupted the doctor to ask, do you mean life support? He said yes. Honestly, Antoine and I really dismissed this prognosis of needing invasive respiratory support despite knowing the odds were against us- we relied on that sense of peace we had gained in the final weeks of our pregnancy- despite the chaos we were thrown into on this day!


The neonatologist informed us he really wanted to wait to deliver Nia until the AM because there was another critical need baby that would be born within the hour and would require of a lot of attention because of an intestinal issue. However, it was our call but wanted us to understand we would be sharing time with the staff- when Nia most likely would need all hands on deck. He said we probably wouldn’t get a chance to see Nia after delivery because she would need immediate attention. Those words were a little hard to digest- but I just shook it off.

My MFM then came in to weigh in with the neonatologist. My MFM wanted Nia to come immediately because he didn’t want to put her at any more risks than she was already up against. However, the neonatologist reasoning for postponing our delivery was valid. MFM agreed to wait, but with one exception- if at any point Nia’s heart rate starts to drop, I would have an emergency c-section overnight which was so scary to even imagine- as if non-emergency C-section itself wasn’t enough. Antoine insisted on us having a time for delivery if we were going to wait overnight. Getting a time seemed a little more complicated than it needed to be. One of the MFM fellows, got us a time- we were going to be the first c-section case of the day! 8:30am!

All the doctors left and there we were left in the room to ponder and wonder what next. What would the next 12 hours bring??? Would Nia manage to survive with little to no amniotic fluid? Why was this happening? Lord are you really going to take our baby from this Earth?

Soon we packed up my triage L&D room and then I was moved to my L&D room. Unbeknownst to me- Antoine called my baby sis to ask her to bring my hospital bag- She arrived with all my needs including what I forgot to pack.

Last Night Preggers

I kept thinking can I convinced the nurse to allow me to shower. My sweet nurse allowed me to take a quick shower but it could be no more than 15 mins because i need to have continuous monitoring of Nia’s heartbeat and movement.

I couldn’t believe my Nia would no longer be within me- I enjoyed carrying her and just wanted the night to slow down.

I showered and laid back down. I asked Antoine for my last pregger request- Gourmet Bell- I mean Taco Bell lol! My third trimester I wanted Taco Bell more times than i could count – but specifically a Mexican Pizza with Chicken no beef and easy on the beans with lots of mild and fire sauce. My Taco Bell craving was so bad I would send my sis and Antoine to taco bell just for the sauce and i would make my own tacos at home most of the time!!! Lol 😂😩🤣 Blame it on Nia! I hadn’t eaten Taco Bell in years prior to being pregnant.

I emailed my virtual fellow EVC warrior mama friend and informed her of what was happening and asked for her family’s prayers. Well she made a global prayer warrior call for our baby Nia. Her testimony and faith had been a blessing to us, yet I was still in awe of her willingness to think of us in such a way!

My bestie and my mom arrived at the hospital around 1am. My sweet Charge Nurse made sure we had extra chairs some everyone could camp out overnight. Oh the night.

We all talked about the outfit Nia would possibly wear home OR memorialized in. Wow! So many emotions, thoughts and feelings. Were we preparing to say happy birthday and death day???…

The Big Day!

The next morning was go time! My chapter sorority sisters had a super early morning prayer call for us! I missed it but heard it was powerful! 💗💚 All the prayer warriors were showing up and speaking to God on our behalf! We prayed as well!

The lead Anesthesiologist came to explain the procedure he was very kind African American doctor with a great sense of humor. I actually saw him the night before as I was wheeled to my L&D room. He looked to be headed home because he was out of scrubs- he smiled and I thought he seems to have a kind-spirit, not realizing He would be the person taking care of me to make sure my delivery is painless as possible.

He explained everything with sincerity yet humor! I loved it! Then my MFM came in to inform me of what would happen.l

Then I was wheeled away around 830am (so a little off schedule), but not before a few final pics of my pregger belly and with my bestie- She really showed up- and it meant the world to me!

Operating Room

In the operating room the lights were super bright! OMG! I guess the doctors need to see everything! My MFM team was absolutely amazing- funny yet professional! One of the female doctors was hilarious and we talked about a whole bunch of everything and making sure I would have minimal scarring. She was originally from Miami- so we joked about making sure my incision would heal and be swimsuit ready- especially since my currently hidden abs were all my glory and I didn’t have one single stretch mark! Thanks Cerave and Bio Oil- because stretch marks run in my family. She walked me through my spinal block with the administering anesthesiologist, while the lead anesthesiologist oversaw my operation.

Then the administering anesthesiologist felt down my spine, and I remember him saying nothing is happening yet.

Then I was asked to sit forward, and I felt the initial small pinch and then my lower half started to go numb.

Then I was immediately assisted to roll over and back. Then things started happening fast.

I saw the infamous blue curtain over me- that I’ve only heard about until now- c-section mommas know what I am talking about…

The Delivery Production

It was a production it seemed. All things were ready for Baby Nia. The Medical team was all there- I couldn’t see many people but I could hear them. Then I heard my MFM say, Ask Dad to come in. Then I knew the show was about to start.

Antoine walked in fully scrubbed up, and he held my hand. So many thoughts were going through my head. Although we had shown so much strength and grace during this process- I couldn’t help but think will Nia show us how strong she really is??

The MFM team were ready, and from what I could hear it seemed life half the NICU team was ready as well! What I didn’t know at the time, so many people were in our room- waiting on Nia because of professional curiosity but yet our Fetal Care team were praying for a miracle.

Go Time

My MFM doctor began and said incision has been made. Yet I couldn’t feel much of anything except some gentle pressing on my stomach. Then at some point my whole body started shaking, I didn’t know what was happening. It was awful, I thought I was going to to fall off the table. Antoine held my left hand so tight, yet my right hand/arm I couldn’t control. The administering anesthesiologist said he couldn’t give me any medicine for this shaking until the baby was out- OMG! In the midst of this unstoppable shaking, I was trying to listen and focus at the same time on what was happening below my blue curtain. I heard my MFM say not too long after incision, baby’s coming then baby’s out! Nia came over my blue curtain crying/screaming on her own- no helped needed. She had a head full of hair- wow! Then immediately I was injected with some magic that stopped my shaking immediately. Thank God!

I couldn’t believe it, a miracle had been performed in this operating room- I was so in shock and in awe that I didn’t have tears immediately, I just remembered seeing the one medical team person I could actually see to my eyes- His Eyes were like WTF- what just happened here! This baby is crying on her own. I learned later, there were tears in the room from the medical team. There were so many happy and shocked people.

I could still hear Nia crying. They cleaned her up and then the greatest moment happened- Nia was actually brought over to us- She was only on CPAP! Wow- totally unexpected. There was no sense of urgency to take her away we even had time to take a couple of pictures.

The doctors finally took her away to the NICU to see how she would do in the first few hours post-delivery.

My MFM medical team worked to finish getting me squared away- there were conversations about making sure I had great healing. Throughout the entire operation the team never tugged and pulled on me- definitely blessed!

Once done, I was wheeled away to the recovery room- now that felt like forever. I remember lying in the bed thinking wow Nia is here and breathing with little support.

For some reason it seemed like it took forever for me to get out of the recovery room. Honestly, not sure why.

When I finally arrived to my post-partum room- I was so happy. I could finally rest. My MFM doctor came by. He informed me that it was definitely the right call to deliver Nia. There was no amniotic fluid, and I had a velamentous cord insertion (VCI) with my placenta, which I learned later can be sometimes difficult to diagnose in utero. VCI has the potential to cause low birth weight and/or still born babies. There was no explanation for the non- existent amniotic fluid-I had no ruptured membranes.

My doctor said yes Nia is nothing short of a miracle all the way around. She fought to be here on so many levels.

So the NICU journey began…..

Dancing in the Rain

After Antoine and I decided we were going to carry Baby Nia to term, despite the odds being against her/us- what better way to celebrate this life than a Babymoon!!!! At times we felt like we were drowning in Nia’s diagnosis,  but instead of living each day in sadness we wanted Nia to experience what we loved to do most- vacation at the beach!

Prior to finding out we were pregnant, we had planned to travel to Barbados for our 5th year wedding anniversary and stay a week. However, we could no longer do so due to me being pregnant and Zika still being an issue in the  Caribbean .

Instead of Barbados for our anniversary trip, we decided on a babymoon to Amelia Island, Florida in late July 2017. This trip was absolutely amazing. We stayed at the Omni Resort, Amelia Island and had some of the best local cuisine in Fernandina Beach, Florida area.  We lived this babymoon up by including a maternity photoshoot. If Nia didn’t have long with us, it was important to capture how beautiful she made me feel. The photoshoot was absolutely amazing. We had a ball! From my makeup artist, Monica Hayes to  our awesome and spunky photographer, Kellie Boston of Boston Photography.   We had our photoshoot on the first day and were able to truly vacation our next few days on the island.

Antoine and I laughed, rested,  had good eats, woke up to beautiful sun rises, walked the beach, soaked in the sun, and shared great reflection on our pregnancy journey. Throughout our babymoon, I received so many compliments on how beautiful I looked preggers and still able to dress fashionably. Those nice words went a long way because no stranger  knew that the odds were against us and that this pregnancy was anything but favorable.

On this trip we reflected on how blessed we were to become parents no matter for how long. Nia was kicking and growing in me, regardless of what the ultrasounds and experts said. She was enjoying being sunny side up and snugged close on my right side. Allowing this beautiful life to grow in me and being able to give her the best on this earth is what mattered even if she never got to live outside of my womb.

Nia didn’t mind all the goodness from this trip either, especially food 🙂 We had fudge, ice cream, local seafood, and whatever yumminess that came along. This was a happy place and we didn’t want to return to our reality. In all honesty,  we wanted time to please slow down because the faster time tick the less time we had with Nia……

So instead of thinking of the end, we decided to Pray and Dance in the Rain!

Amelia Island- Sunrise July 2017- Widescreen
Sunrise from our resort room!
Sunset Photo- Me on Rocks
Maternity photo taken on personal phone 🙂

Amelia Island Sunset

Our Pregnancy Journey

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 okaywell 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! 🙂

Shoemate Surprise Onesie 2017
We sent our family framed photos with this image via mail- April Fool’s Weekend! We had taken this pic during the Cherry Blossom Bloom here in DC.

Mother’s Day

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!

Photo Grid from Facebook Pregnancy Announcement

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.

At MFM- before we found out the devastating news about our baby! I remember telling Antoine- let’s capture this moment-day!

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.

Elective 4D Ultrasound at 21 weeks


Heartbeat Monitor
Nia’s heartbeat recorded at 4D Ultrasound. We would always have her near even if she wasn’t physically on this earth anymore.

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.

After crying for what seem like days- we tried to smile through the storm!

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.

New Orleans
In New Orleans at LS Wedding- Beautiful Ceremony and Reception- Worked hard to smile despite my reality.


Shoe- Nia
Antoine wrote Nia’s name on a small shoe hanging in his rear view mirror June 2017- to always remember even if she was no longer going to be with us.

God Answers

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….

God’s Provision

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!

The Continuation

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.

Delivery Day
Shortly after Nia was delivered via c-section

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…

Erica S.

Team A&E