Forever a Heart Mom

Forever a Heart Mom

A hospital room is an unlikely place to make a friend. In fact, I’m quite certain we would have both preferred a private room, a solitary place to care and weep and wonder and be vulnerable without any audience. But there we were, in separate corners, each caring for our critically ill newborns. We greeted each other politely in the mornings and said good night upon evening departures, but there was not much chat otherwise. Then one day, Ria and I discovered we were both from Trinidad and Tobago. It was like a large block of ice that was broken and a friendship was born. Apart from the obvious struggle that we were both enduring as mothers of children with congenital heart defects, we understood things about each other that other people just couldn’t. From that day, we began sharing our experiences with each other and it brought a great sense of comfort to have her in the cardiac intensive care unit with me.

Ria and I fantasized about taking our kids to our beloved homeland one day, to enjoy all the things that we loved as children. Once my son was discharged, we promised to keep in touch. It took some time for our family to get settled at home and several weeks passed before I was able to reach out to Ria. When I did get in contact with her, my heart was broken to learn that her precious daughter Carys had passed. My heart still aches when I think about it.

Two years later when Ria announced the upcoming birth of her son, she reminded well-wishers that she was not becoming a mom “for the first time.” She was already a mother. A mother who had endured the ultimate pain that a parent could experience. I am honored that I was able to witness Ria in her element as a first-time mom. A fierce advocate for her child and a dedicated care-giver, she was there all day, every day. I am also honored that I knew Carys. She was a beautiful baby. I can still picture her delicate little features and sweet face. I hold a special place for her in my heart and mind, just like I do for her amazing mom.

Ria Chattergoon, is a mother of 2 children. She is a former dancer turned employment lawyer. She has been married to her husband Craig for 7 years. Today and always, Ria is our amazing mom!

On the greatest challenges of her motherhood journey

It’s the typical story of today’s career minded woman.  I put off having a baby to “get my career on track.”  That took a life of its own and the years just went by much quicker than I thought.  At 34, my husband and I decided to take the plunge! We would just see what happened.  Well, what happened was, I got pregnant instantly (literally two weeks after getting off birth control).  That pregnancy, however, ended in a miscarriage 6 weeks later.  With no reason and no explanation given by my doctor, it just went away.  Four months later, we were pregnant again, that pregnancy lasted 8 weeks.  Again, no explanation, except this is more common than I previously knew.  After rigorous testing to determine whether we could pin point the issue, my doctor determined I was not producing enough progesterone to sustain a pregnancy.  Six months later, I was again pregnant and immediately started taking progesterone.  Success, everything seemed fine, pregnancy was viable and we were on our merry way.   We did the Maternity 21 testing for abnormalities at 11 weeks and everything came back perfect. We were beyond excited at this stage.

Then, at our 20-week ultrasound, excited to determine the sex of our baby, we were given the worst news of our lives.  I still remember the moment.  After determining that we were having a girl, our ultrasound tech who we knew well, just became silent.  She couldn’t speak. Our doctor came in, and said that our daughter had an underdeveloped left ventricle, Hypo-plastic Left Heart Syndrome (HLHS).  The diagnosis was not good. He spoke about options, including terminating, and surgical options that would give her a 50% chance of survival.  I wish I could tell you all that was said, but I blanked out.  Me, the girl who could think quickly on her feet and had a response for anything and everything, went completely blank.  I just remember getting into the car and screaming out loud.  The worst thing that could possibly happen, was happening.  

I decided that night, that terminating the pregnancy was not an option.  You see, the very night before, I felt her kick for the first time.  As any mother knows, that is the moment you really feel that connection with your baby.  There was no way I was giving up without a fight.  It’s a decision I have questioned and will always question. Did I make the right choice? Did I contribute to her inevitable suffering?  Literally the next day, we were in fight mode, we lined up a pediatric cardiologist, scheduled the necessary tests, scheduled meetings with the top surgeons at Miami Children’s Hospital and Boston Children’s Hospital.  Within weeks, we had a surgical plan and treatment plan in place.  Then six weeks after that news, my dad passed away.  It was as if the world was just crashing around me.  

Despite my efforts to deal with stress, my daughter Carys Rose White, was born at 34 weeks.  She was underweight at 3.8 lbs., though she was breathing on her own.  She was transported to Miami Children’s Hospital’s cardiac unit. The mama bear instinct immediately took over. I checked myself out of the hospital 6 hours after giving birth and headed down to MCH.  Our daughter was not able to follow through with the plan we initially had as she needed to gain weight.  At 7 weeks, we could not wait any longer for her surgery, and the day before Thanksgiving 2013, she had the surgery.  The surgery went well, our surgeon came out excited that she came off bypass immediately. However, three hours later, her body rejected the procedure and she just clotted all over. Despite valiant efforts by a team of surgeons, our Carys Rose passed away on Thanksgiving Day 2013. 

On life after loss:

I don’t know how I survived that day, or the weeks, or the years since or even today. I’d be lying to you if I told you I knew the answer.  While my husband relied on his unwavering faith, it wasn’t that easy for me.  I questioned God and the purpose of living. I still do, even with all of the blessings we have had since then, I do, on a daily basis.  In those moments, I have learned to meditate and breathe through it, but most nights, it ends in tears. 

While most days are significantly better than they were in the year following my daughter’s death, it’s a struggle each and every day.  Not one day goes by that I don’t wonder what she would look like, what she would be like, how she would interact with her little brother and how different life would be for us.

It’s a day by day process and some days are harder than others.  Some days it feels like a knife in the chest and it’s hard to breathe.  Other days, there are moments of clarity and understanding that I will see her and be with her again. 

On pregnancy after loss:

Whoa! My second pregnancy was so stressful for me, though I put on a great face for my family and friends. The first five months I was a complete mess. I was trying to manage my stress levels, while suffering from severe anxiety and guilt.  I didn’t want anyone to think I was trying to “replace” my daughter.  I didn’t want her to think that.  Then I found out I was having a boy, and a whole different fear set in (I always thought I was so much better with girls). I remember having nightmares that I wouldn’t be able to bond with him. Thankfully, I had a great team of doctors, including my OB/GYN Dr. Delissa Skeete-Henry and Dr. Adolfo Gonzalez, who were with me every step of the way. 

After the 20-week ultrasound, it was easier to relax.  I was still paranoid and elected to have an echocardiogram, to ensure I could go home with peace of mind (everyone thought I was nuts…I could care less). Thankfully, Carys’ pediatric cardiologist, Dr. Jocelyn Garcia DeViera, understood my fear and assured me that I was doing the right thing.  She even personally came to the hospital to ensure it was done to her specifications. 

Around 22 weeks, I just decided to throw myself into work and didn’t give myself space to be anxious anymore.  I even tried a case the week I was due to give birth!

On what she loves about motherhood:

Motherhood is something I didn’t know I even really wanted until I had it.  It is the most purposeful experience I have ever had.  With my daughter, I grew to understand how boundless a mother’s love is and will always be for her child. With my son, I get to experience the utmost joy I have ever experienced just simply watching him smile. 

On the life lessons she has gained from her experience:

That I don’t necessarily need sleep to function? Seriously, life is and will always be unpredictable. Cherish every day and focus on the present. Being mindful every day is key.  It’s easy to get caught up in routines, work and life but you have to take the time out to smell the roses!

On advice for new moms:

Be present, even when you are exhausted beyond belief.  Look at every smile and moment and cement it in your memory.  Don’t stress the small stuff - the dishes will get washed, your house will get picked up (trust me this is coming from an OCD person). Enjoy the journey, regardless of how stressful it can be sometimes. There is no career and no accomplishment that could ever match or surpass the experience of motherhood. 

The Chattergoon-White family is raising funds for Nicklaus Children's Hospital in memory of Carys! Please support by donating any amount you can! No amount is too small! 

Donate in honor of Carys!

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© Nicola Rios Nogales and, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicola Rios Nogales and with appropriate and specific direction to the original content.

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