Congenital Conditions

Learning to Trust God, Even When I Don’t Understand – by Natasha McSeed

I met my husband Larry in college, while we were both counselors at a summer youth program. Larry attended the University of Delaware, and I attended Lincoln University down the road. After clicking instantly, we became friends and seven years later we were married.

Shortly afterward, we moved to Ohio for Larry’s job. Even though we were away from our families, we had each other, so life was good.   We had already planned our family – two children, two years apart – a boy first, followed by a girl. According to our plan, we were blessed with a healthy, perfect baby boy named Jaden. Keeping with our plan, eighteen months later I got pregnant again. I prayed for a little girl to complete our family. We were overjoyed to learn Jaden was going to have a little sister.  Life could not get any better and our little family was about to be complete, just like we envisioned.

My pregnancy was normal and there was no indication on the ultrasound that anything was wrong with our baby girl. At my final prenatal check, the doctor determined it was time to deliver. On July 7,2005, we headed to the hospital, excited to finally meet our precious baby.  

I thought I knew what to expect since I was a seasoned mom. However, this time was different. Brielle’s cry wasn’t as robust as Jaden’s; matter of fact, she sounded like a cat meowing.  She felt limp, looked pale, and had distinct facial features. Brielle seemed un-alert and wouldn’t nurse.  She weighed five pounds, even though we were told she was seven pounds at our prenatal visit the week prior.  In my heart, I knew something was wrong.  

Brielle just seemed different… call it a mother’s intuition. While everyone, including the nurses and doctors, tried to assure me everything was normal, I was convinced something was wrong. I started praying to God that my baby would be okay, specifically that she would latch on and nurse, and get some color back.  It seemed like everyone thought I was being an overanxious mom, but I was scared. Even Larry tried to assure me Brielle was fine.

That evening, an older nurse was assigned to us during the shift change, and I shared my concerns with her. She looked at Brielle, commented that her head was very small, and proceeded to call in a neonatologist. When the doctor came in, he took one look at Brielle, heard her cry, and scheduled her for medivac transportation to a larger hospital with a more advanced NICU. Larry had already left the hospital to be with our son who was staying with a neighbor. Alone with no family in the area, I was very scared and did not know what to do.

I was discharged that night so we could meet Brielle at the other hospital.  I begin to bargain with God. I promised if He let our baby come back home healthy, I would do anything the Bible said, go to church every Sunday, pray more, be a better Christian and do more to help others. Brielle was in the hospital for fourteen days due to failure to thrive, slow heart rate, and extremely weak muscle tone, needing to be fed through a tube.

After a battery of tests, we received a devastating diagnosis of Cri du Chat Syndrome, also known as 5p- Syndrome. Cri du Chat means ‘cry of the cat’ in French and is a very rare condition caused by a partial deletion of chromosome 5. Brielle’s cry sounded like a cat’s meow, due to her larynx developing abnormally as a result of her chromosome deletion. The disorder is characterized by intellectual disability, delayed development, heart defects, low birth weight, and weak muscle tone.

Cri Du Chat Syndrome occurs in an estimated one in 20,000 to 50,000 newborns. The deletion occurs most often as a random event in the early stage of fetal development. Babies impacted typically have no history of the disorder in their families. Her syndrome was so rare and there was not a lot of information out there for us. There was no “cure” or treatment to make all the abnormalities “go away”.

After receiving the diagnosis, I felt sick to my stomach as I couldn’t even pronounce it. Scared, and angry, thoughts flooded through my mind of all the things she would never be able to do. I remember the geneticist saying Bri would never walk or talk and she would be “mentally retarded” – those were his exact words.  I felt paralyzed; I literally had to leave the room and rushed to the bathroom because I felt sick to my stomach.  

Back then, Larry’s faith was a lot stronger than mine.  I remember asking him despair, “What do we do now?” He responded we would take her home and just love her and give her the best possible life. I remember the drive home from the hospital.  Bri was buckled up in her car seat with me and my mom in the back seat and Larry was driving.  We rode in silence, each still trying to process the news. 

I felt God took my dreams of this perfect little family away. I didn’t know why He chose me – why our family?  All I kept thinking about was the life I envisioned was over. It felt like a death had occurred and I was in mourning.  I mourned she would not go to prom, have any friends, go to college, join my sorority and get married, and have kids.   I grieved for her, but also for our young family.  I grieved a future which was unknown and unwanted.

When we arrived home, I put Bri down for a nap and curled into a fetal position, and just cried.  I cried like I lost my child, even though I knew that was not the case. I was angry and hated these dark thoughts I was having.  I ask God why this was happening; I questioned His motive, and I went into a deep dark state of depression. I could not see my blessings, I had a pity party every day.

I realize now I was grieving the daughter I wanted even though in my heart I knew I loved the daughter I had. The next few months were hard. I took an extended leave of six months from work. Navigating this new normal included finding doctors, therapists, and services for my newborn while juggling an active 2-year-old. I was anxious, exhausted, stressed, and depressed while trying to do it all on my own.  I had a lot of pity parties through her first year of life where I was the guest of honor. I was developing a growing resentment towards God and had no joy. I thought I would never be happy again. Looking back, I realize I was so focused on her diagnosis, that I missed out on her being a baby.

My mom would visit from New York often. She was a God-fearing woman who prayed for me and with me, even when I was too discouraged to pray.  Whenever she came to visit, her presence, her energy, and her faith in God gave me a little bit of hope. I remember her telling me to quit carrying all our problems and just release them to God, as He would take care of us, take care of me, and take care of Bri. She would pray over Bri every day, a few times a day even. 

A turning point for me was taking Bri to the Cleveland Clinic Children’s Hospital. After seeing all of the children and families there for various reasons, I felt SO guilty and selfish. I finally realized it’s not all about me, and there were a lot more serious cases out there. Traveling back and forth each week gave me a new perspective, as it opened my eyes to see what an unexpected blessing Bri was to our family.

I was able to leave the hospital every week with my baby and there were many other moms who were not as fortunate.  I realized others were suffering too and everyone had their own storms.  I took my mother’s advice, and I started talking to God more, having our quiet time together every day.  I was still sad, as I didn’t want to be a caretaker all my life, and still fearful about what our future looked like. But the more I talked and reflected with God, the more things begin to slowly shift.  

Even though I had not been able to see it initially, I realized God had never forsaken me during those difficult times. He had always provided an answer in my darkest times, and I was never left alone. I knew I needed to start counting my blessings so my healing could begin. I had a supportive and encouraging husband who has never wavered in seeing our daughter as the angel she is. We both had good jobs with great benefits which allowed us to seek the best doctors and therapists in our area and ensure Bri can develop to her fullest potential.

We found a national organization called the 5P- Society, whose mission is to spread awareness of this syndrome. They provide valuable information, education, and support for families, educators, and medical professionals to maximize the quality of life for those with five P minus syndrome. Every blessing we received was from God’s grace. He has always put the right people in our path at the right time to help us navigate through our new world.

My daughter came into this world with a purpose.   Even though we only wanted two children, God blessed us with another daughter two years later.  He knew Jaden and Bri needed a sister before I did, and we soon welcomed Payton to our family. Our faith grew as God provided for us; every need we had, He met.

I wanted to go back to work and couldn’t find adequate childcare for a medically fragile child. My mother-in-law left everything she owned back in Philadelphia and moved in with us in Ohio, without asking any questions. Bri has given our family opportunities. Opportunities to discover the depth of our character, love, and patience have taught us what is truly important in life. For me she has given me something more valuable, she has allowed me to explore my spirit deeply, discover hope, and strengthened my faith.

Now don’t get me wrong, I still have my days when I cry, when I’m sad or mad, and when I am frustrated at people staring. I still struggle with not being able to just pick up and go out to dinner, have a family outing, go on vacations like the typical family, or have to change my 17-year-old’s diaper.  The difference is now, I seldom ask God “Why?” anymore.  I’ve learned to lean on God throughout this journey.  God has proven to me that He is faithful.

Brielle will need lifelong care and assistance; she is nonverbal and will never be able to live independently.  When she was younger, I would stay up at night and my prayer would be if she died it would be one day before I did so I can make sure she is safe and always protected and not be anyone else’s responsibility. 

She will be 18 years old next year and is walking, something we were told she would never do. She is thriving and happy.  Our life is different and beautiful at the same time. As my husband and I navigate the next stage of her life plan, we know we have to let God lead us. I know from the bottom of my heart – by His grace and mercy we will be ok. 

It is through my daughter I know without a doubt there is a God. If I could go back to 2005, I would tell my grieving and depressed self – everything was going to be ok. Even though I didn’t have all the answers, God has always taken care of Brielle and provided everything we need.

Prayer for Moms

Dear Lord,
I pray for our special needs children. I ask you to protect them from evil and give me the wisdom to raise them up in your word and they will know God.

Lord, I pray they always are healthy in their body, mind, and spirit. To bring the best doctors, teachers, aides, and treatments, and supports available.

I pray that our children will flourish, and that they develop self-esteem and positive images of themselves.

Lord, I pray that our families give thanks constantly for what they have because God is good and he will provide everything they need.
In Jesus’ Name, Amen

~Natasha

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Want to hear more of Natasha’s story? Watch her Moms Night In conversation on YouTube

Or watch on Facebook here.

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