Congenital Conditions

Having Faith in God’s Timing – by Tameka Roebuck

My story consists of having not just one, but two children born with congenital conditions. “Congenital” is of or relating to a condition present at birth, whether inherited or caused by the environment, especially in the uterine environment. My daughters were born sixteen years apart, both premature. My oldest daughter Faith was born four weeks before her due date and Kairos, my youngest daughter, was born ten weeks early. Both of my girls have truly been blessings in my life.

As a breech baby born four weeks early, Faith was delivered by caesarean/c-section delivery. She was born with a condition called hip subluxation, which is more common in breech babies, and more often with girls than boys. Faith’s hips were only a couple of stages from complete dislocation; she was born completely bent in half. The medical staff laid her down and for a while tried to stretch her out as her body kept reverting to bending.

I realized once she was born, my pregnancy had not been as expected. I didn’t get to experience much limb movement through my belly, although I looked forward to it every day. My gauge for how she was doing came in the form of her having hiccups regularly. To this day I believe my short torso played a role in both of my girls being born early in that they lacked space to grow and maneuver around.

A week to the day of her birth, we took Faith to see an orthopedic specialist. As a nervous new mom at the age of 23, I recall walking through the halls of AI duPont Hospital for Children in Delaware (now called Nemours Children’s Hospital), so worried about what would be the outcome. Her subluxation diagnosis led to her wearing a Pavlik Harness for nine weeks, so her joints were aligned and had a chance to stabilize.  It kept her knees bent and thighs spread apart as if in a permanent seated position. 

There wasn’t a reason to expect anything other than recovery, so what I internalized most were thoughts of having delayed first events, like her first bath, and whether people were nervous to hold her. But I found moments that tickled me, like working around her thick legs and harness to wash her up. 

She had to be followed by an orthopedic specialist for a couple of years, and there were no further complications or long-term damage. She’s been fine ever since and just recently graduated with a Doctorate of Physical Therapy and started her first PT job. We are very proud of all she has accomplished.

Kairos was my miracle baby. My husband Ron and I tried unsuccessfully for three years to conceive before she was born through in-vitro fertilization (IVF). The entire experience was sprinkled with traumatic events. I encountered a medically necessary stoppage during my 1st IVF cycle due to hyperstimulation, which could have led to the production of countless eggs. In another harrowing incident, I woke up during my IVF egg retrieval in excruciating pain.

After Kairos was conceived, we had a scare with a threatened miscarriage at twelve weeks. After we got past that, my pregnancy continued without incident until one day when I was preparing to travel to New York for work. I just didn’t feel right and started showing early signs of labor. At thirty weeks, the biggest concern with such an early delivery was lung development, so steroids were pumped while the doctors did their best to hold off the delivery. Three days later I delivered Kairos via another c-section at 2 pounds and 13 ounces.

After a few days went on in the NICU, the doctors realized she was not releasing urine. They started intermittent catheterization to manually empty her bladder. The doctors and nurses monitored her closely, and after some time, she started going on her own, and eventually, the condition seemed to have normalized.  

I soon learned a lesson on the importance of parental and/or patient advocacy.  I had spent so much time in the NICU that I knew something was wrong as Kairos wasn’t presenting as her normal self, even though the medical staff didn’t notice. She wasn’t acting the same and appeared to be sick and in discomfort and as if she was feeling pain.

Her condition led me to request an x-ray in the middle of the night. Unfortunately, the resident doctor who reviewed her scan gave an incorrect assessment, with a conclusion that nothing was wrong. It wasn’t until the next morning when the attending physician reviewed her results during the rounds that we immediately found ourselves in a state of emergency.

At just five weeks old, Kairos had to be transported via a small clear box with all the medical lines, monitors, etc. to AI duPont Hospital for Children for what was thought to be bowel obstruction surgery. As she was prepped for transport with IVs being placed in her, the nurses also catheterized to empty her bladder only to realize her bladder had reached ten times the capacity it should be. It was only by the grace of God that it did not rupture and end her life.

After she was transported to the children’s hospital, further review and testing determined rather than bowel obstruction, it was renal kidney failure that had sickened Kairos. Thankfully, she didn’t sustain permanent kidney damage but did require intermittent catheterizations every four hours. My husband and I learned how to catheterize Kairos and at seven weeks old, she was released from the hospital.

Our lives were altered significantly as we had to get to Kairos every four hours. This required Ron and me alternating leaving work to go to her daycare. We thought her condition was a “Non-neurogenic Neurogenic Bladder” based on her symptoms. Thankfully, we had flexible jobs that allowed us to care for our daughter as needed.

At three years of age, Kairos was scheduled for surgery due to a suspected tethered spinal cord. During the surgery, the neurosurgeon found she did not have a tethered cord. But rather as he tested her nerves, he determined she had nerves that did not fully develop in utero, or even as a preemie.

Yes, having a preemie that early, there was still lots of development occurring, some right before our eyes. We received her correct diagnosis of “Neurogenic Bladder”. Kairos has learned to complete her own catheterizations and has increasing responsibility to handle most of her care now.  She also has medications she must take to help manage the side effects. 

Her condition is considered permanent, with few approaches to managing it along with few trials. And while this is so, I’m still believing in prayer. I know there is healing power and so it is up to God to say whether it will be a lifetime, and I accept His will, although not always easy.

Looking back, I would say at times it felt lonely.  I didn’t find a support group and there wasn’t a lot of information about neurogenic bladders that was helpful for us. As a mom, I’ve wished I could do something, have it put on me rather than her just so she could be “normal.”  While I wondered why, sometimes felt sad, and at times mad, it wasn’t with intent to blame God.  It was more about just wishing it wasn’t her story. And yet still, ten years later, I’m not through my process of healing, or grieving all the traumatic experiences: the process to get pregnant, the threatened miscarriage, the premature birth, and Kairos’s diagnosis. 

Hers was yet another pregnancy where I felt robbed of having normal maternal experiences of moms carrying their babies full term without any issues.  But still, I’m thankful for whatever was necessary, I have both of my girls thriving and striving. 

I share my story because I needed this as another step toward my own healing. And so, I am thankful for this opportunity to do so.  Additionally, I hope to be a beacon of inspiration, for someone.  And lastly and most importantly, this allows God to show and affirm how He’s always there and He allows us to turn tests into testimonies. 

I couldn’t have done this without my girls whom I immediately went to and asked if they were okay with me sharing our story because this isn’t just my story. It’s about their medical conditions. And so, it was the most beautiful experience to immediately have them say yes. Kairos directly acknowledges it’s what we’re supposed to do. If this is something that can help somebody else going through something similar, or if someone has a child going through it, this is what we’re supposed to do.

If you’re going through something, whether a condition or situation, remember that we must allow ourselves to feel what we’re going through and know it’s okay to do so. Healing has no timing rule, it can be quick, or it can be years.  Next, we must trust and understand sometimes we’re vessels and it’s not about us, but it’s about what God is doing in the circumstance.

And so, I’ll continue to trust God will keep me and my girls, who are not their conditions, but rather they are who God has made them to be, through and beyond the conditions.  And lastly, advocacy is super important in health care. And so, whether it is dealing with a child in the hospital, dealing with a parent in the hospital, relative friends, whatever it may be, advocate, advocate, advocate.  Trust your intuitions and trust God.

I close by giving thanks and praise to the Almighty. He gave me the strength to share, and I hope my story can help someone else. He is truly blessing me and reaching me in new ways with affirmations.  The affirmation I hear God speaking to me comes from the names He gave me for my girls.  Their names combined meaning, Faith in God’s Time.”

Prayer for Moms:

Most Heavenly and Gracious Father, 

I thank you for this opportunity to be your vessel and share our story so that it may help someone. Lord, I ask that you bring comfort, peace, reassurance, strength, courage, acceptance, and ultimately a praise to those that are with congenital conditions and those that provide care. Have YOUR way God and may YOUR light shine through always.

In Jesus’ name, 

Amen and Amen

To Tonya:

Thank you! You are special to me because while in the NICU for seven weeks with Kairos, you showed up to the hospital in person.  We always know friends are there and people reach out and you appreciate that. But there’s something to be said about spending every day in and out in the hospital and seeing the face of a friend.  This vision you’re obediently walking in is a blessing as you’ve provided an avenue for moms and women to share experiences to help uplift or, help others that have gone through, are going through, or coming out.

Faith-Filled Moms Team:

Thank you!  You create a beautiful safe space with God as your guide, in which He will continue to bless.

~Tameka

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

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