Child Health Diagnosis

A Healer and Provider in Desperate Times – by Sha-Ron Williams

My once-normal life ended shortly after the birth of my youngest daughter. Already a mom to two daughters, I was excited about our growing family and couldn’t wait to meet my new bundle of joy. About a month after Janelle was born, she was diagnosed with sickle cell disease based on the preliminary screenings at birth. My older daughters were in school, my husband was at work, and I was home with my baby when the doctor called with the testing results. We were adjusting to our new addition and never saw any signs or symptoms that something might be wrong.

I knew about sickle cell disease from other family members who had the condition, so I immediately became overwhelmed and began to weep for Janelle. Overcome with guilt and dread about what her future would look like, I wondered what her life expectancy would be. Sickle cell is hereditary, so was this our fault?

My mind was flooded with fearful and anxious thoughts. I needed to center myself, so I called my husband, Eudone. He was the calm and stoic one, always strong for me. Our pediatrician connected us with the Children’s Hospital of Philadelphia (CHOP) and our journey began.

Red blood cells are curved and shaped like crescent moons in people diagnosed with sickle cell disease, which is more prominent in the African American community. These sickle cells can get stuck in the veins, slowing down or blocking blood flow, usually at the joints. The cells also cause the bone marrow to be overactive, working extra hard to keep up with red blood cell production, causing anemia. There is no cure for this extremely painful disease.

Janelle was diagnosed with Sickle Cell Type S, which is also known as sickle cell anemia and is the most severe form of the disease. Initially, she was not experiencing any pain. The first time she experienced a crisis was at four months old while we were at church. She was typically a happy, pleasant baby who did not cry often. She became very fussy and was unable to be soothed.

We were trained to look for swelling in the area where she would experience a pain crisis. I noticed jerking motions in her legs, causing me to check her feet. One foot was very swollen. We were instructed to keep her hydrated to help with blood flow and administer Tylenol to alleviate the pain until the crisis passed. Nothing could have prepared or helped us understand this illness until we experienced it for ourselves. It was so difficult because as a baby she couldn’t explain what was wrong. I remember her cry during those moments of pain – she screamed in agony and it broke our hearts.

We did not know what to expect but trusted God to be with us through this disease. I knew our lives were going to change just because of her diagnosis. I had worked in the medical field, which can be extremely demanding, but I knew I couldn’t give 100% to both responsibilities. When she was two, I stopped working because my family needed me to be fully present. As we began to adjust our routine to fit her needs, I felt a new form of guilt – my other daughters were not getting as much of my attention due to Janelle’s needs.

At three, Janelle had her spleen removed due to the damage from the cells and will require penicillin for the rest of her life, as she is now very vulnerable to infection. At the age of four, Janelle was given morphine to help relieve her pain. By the age of eight, she had been hospitalized several times, including ICU stays and multiple surgical procedures, including having her gall bladder removed. Janelle has had over one hundred blood transfusions. Because of the number of transfusions needed, I encourage people to regularly donate to the Red Cross and flag their blood for sickle cell patients!

It was only a matter of time before my husband and I would be stretched in unimaginable ways. When Janelle was fourteen, my oldest daughter Melissa suddenly became ill. Melissa won a full basketball scholarship; as she began college in the fall, she started to experience chest pains, which eventually went away on their own. We didn’t think much of it. A year later, as she was preparing to return for her sophomore year, she started to have chest pains and shortness of breath. We decided to take her to Cooper Hospital in Camden, NJ for testing, and was initially diagnosed with sarcoidosis.

She was admitted to the hospital and continued testing due to elevated blood pressure. The following day, the hospital discharged her, but she got progressively worse. We then took her to the University of Pennsylvania Health system for further evaluation. After three days of testing, we were informed she did not have sarcoidosis and was subsequently diagnosed with Lupus. She remained in the hospital for a week while they continued tests and started treatment.

After some time on the treatment, we saw a marked improvement. When Melissa was released from the hospital, she transferred to a college closer to home so we could monitor her health. During the move-in for her senior year, she experienced a severe lupus flare that sent her health into a downward spiral. She was initially diagnosed with pneumonia and a few days later she was diagnosed with MRSA, which is a very resistant bacteria that can cause a severe infection. Melissa soon experienced acute liver failure and immediately went on the transfer list.

Everything happened so quickly. Our lives changed in an instant and we really didn’t have time to think about what was next. Eudone and I both took a leave from work and were at the hospital around the clock. Every decision we made placed Melissa’s life in our hands. We could do nothing without depending fully on God, and rely on His wisdom for what to do, so we could determine what was a good idea and what was a bad idea. We needed discernment for when to agree with the medical staff and when to ask for other opinions.

At this moment, my husband and I faced a turning point in our faith. We always knew how amazing the power of God was but had no idea how He was about to use the hardest times of our family to reveal himself to so many people. The top transplant doctors at UPenn were treating Melissa, and whenever they gave us devastating updates, we were determined to believe God.

At one point, Eudone told the medical professionals that if they could not understand and respect the power of God, they would not be allowed in the hospital room and other medical staff would be requested. We prayed daily and watched as God ministered to people who were coming in to care for Melissa. Nurses would weep as they came in and out of the room, not because of sadness but because they could feel the presence of God.

It was also not lost on us that our ethnicity played a role in how our family and our children were received in the medical community. The team was very persistent in discovering different aspects of our lives – asking many questions about Melissa and the support system she had. You would never think that educational background, socioeconomic status, and familial surroundings were factors in the decision of who receives a transplant.

There was finally a liver available, but it was too big for Melissa’s body. She still needed it to stay alive, but ten days after the transplant, that liver began to fail. Suffering from multi-system organ failure, Melissa became too unstable for another transplant. The doctors then suggested something unheard of – to take out the liver and allow her body to stabilize. The team’s head surgeon confessed there was nothing to do but wait on a higher power. Fully believing in the power of God, my husband responded, “Are ya’ll ready?” and we decided to remove her liver.

Fully ventilated and in a medically induced coma, the doctors paralyzed her entire body so her system would not fight against the treatment. On a bypass machine, Melissa lived for twelve hours in the Intensive Care Unit (ICU) without a liver in her body. This extraordinary experience caused staff from other floors to come and witness our miracle with their own eyes. Her experience was even documented in National Health Institute’s records.

After seventy-two days in the hospital, Melissa received a successful second liver transplant on October 9, 2017, and came home three days before Thanksgiving. During this time, she had to relearn basic care for herself: how to bathe, feed herself, talk, walk and so much more. I have so many pictures of her as she worked so hard to regain her strength and mobility. Being a transplant patient changed her life forever, and although the hardest times were behind her, she still had to work physically and mentally to recover. She also battled depression, as she readjusted from the life she knew to the life she now has.

We experienced not only the medical emergencies of our children, but also the economic changes affecting our family, and saw how much of a provider and a sustainer God truly is. He met us at every turn, covered our family, covered our marriage, and strategically put people, family, friends, and strangers in place to support our family. God allowed us to create an atmosphere of peace in Melissa’s room and throughout our family.

As I saw how God moved in other people’s lives through our interaction with them, I came to know that we were all just vessels. We were God’s instruments to make Himself known to people who may have never gotten to know Him, had we not been placed in these difficult circumstances. It was nothing but God’s grace, power, and mercy that my family got through such hard times. He always knew the outcomes, so we had to trust Him while we went through it.

During this time, Janelle’s needs were not lost on our family. She was hospitalized twice at CHOP while Melissa was in the ICU at UPenn. During this time, my husband and I swapped places daily, one of us with each of the girls. When Janelle was hospitalized for the second time, the chief hematologist at CHOP was aware of Melissa’s condition via one of the transplant surgeons at UPenn. She did not know it was Janelle’s oldest sister but had heard of this once-in-a-lifetime circumstance unfolding.

When they discovered we were all family, they sprang right in to assist. Since Janelle was always treated on the same floor with the same staff, they became like family. They stepped right in, assuring us that Janelle was in great hands so that we could focus on Melissa. We also taught Janelle how to advocate for her own needs, because she would need to for the rest of her life. She learned what treatments and medications she needed, how to assess her symptoms, and what action needed to be taken. This allowed us to focus on Melissa when she needed us the most, knowing that Janelle would be taken care of.

We should never try to predict how the future is going to turn out, because God can take any situation and turn it around. His Word says He makes all grace abound towards us. Yes, things can be so difficult when you are going through them, but you just keep going. After you come out, you will look back and see all the trauma you may have experienced, but you will also see God’s hand at work the entire way. It was as if God shielded me from the brunt of all that I was facing. God comforted me as I processed all that had happened to us.

Though Janelle is still living her life diagnosed with sickle cell and Melissa is still living her life diagnosed with lupus, they are thriving. Janelle is breaking her own glass ceilings as a successful college student studying to be an athletic trainer at Rowan University. Melissa has graduated college with her bachelor’s degree, went on to receive multiple certifications, and is currently an HR director. My children and family are living proof of what God can truly do.

Encouragement for Moms:

As mothers, we carry the burdens of our children, but we are also their biggest advocates.  Our children are stronger than they appear. God built them to handle what they are going through. Teach them who they are in God and to advocate for themselves in life.  There will be difficult times in their lives, but God will prepare you for those moments to be what your child needs you to be, even when you don’t feel like you are. God will reward you in his timing. My favorite scripture is Genesis 15:1 After these things the word of the LORD came unto Abram in a vision, saying, Fear not, Abram: I am thy shield, and thy exceeding great reward. No matter what you may be going through right now, just know “GOD’S GOT YOU!”

Prayer for Moms:

Father God, I thank you for you being the Great I Am.

I thank you for being everything that I and my family have needed. I pray for every mother and family that is going through a trying time and experience in their life, whether it’s expectantly or unexpectedly. Father, provide for them all that they need. Allow them to know they can depend on you, and you will sustain them. Your word says in Psalms 55:22, “Cast thy burden upon the Lord, and he shall sustain thee: he shall never suffer the righteous to be moved.”

In Jesus’ Name, Amen.

Want to hear more of Sha-Ron’s story? Watch our Moms Night In conversation on YouTube:

Or watch on Faith-Filled Moms Facebook page here!

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