This text and images on the left side are editable in admin
Our Friend Sydnee
Not long ago I mentioned finding another Mom like me. That Mom’s name is Melanie Barrett. She reached out to me through NeelysMiracle.com and we became instant friends.
Not long after we met I asked Melanie if she would be willing to share her story through this site. She agreed and started (what I know is) the very difficult process of writing it down for the first time. This is not an easy story to read. It is a story of pain and frustration beyond comprehension. But is also has a very happy ending. If you have trouble reading this post, remind yourself how difficult it was for Melanie to actually live through it. Every Mom deserves a chance to tell their story – And every Mom deserves to be celebrated for having the courage to be aggressive advocate for their child.
This is Sydnee’s Story, Told in her Mothers own words.
On Tuesday, January 26, 2010, my world got rocked. I found my 5 year old girl unresponsive and not breathing. I thought she was playing a game at first – but when I touched her, I knew that this was no game. Her eyes were wide open and her body was stiff. I ran downstairs, grabbed the phone, and called 911. Sydnee had a little runny nose the week before – no fever, no sore throat, just the typical runny nose that she gets several times a year.
On Sunday, January 24, she woke up with a high fever – 105 deg F. We took her immediately to the emergency room where they told us to “go home… it’s just a virus”. So we went home with no blood work or tests of any kind.
The next morning, she was still sick and had a swollen eyelid, so I took her to her pediatrician. I had googled “fever” and “swollen eyelid” that morning and found out that she could have an infection in her eye socket – periorbital cellulitis. Although not very common, it can come from a sinus infection. I was sure this was what she had… even though her runny nose had lasted only a week and typically a sinus infection takes at least two weeks to develop. She was getting very sick at this point and could barely open her eyes. The doctor agreed that she had periorbital cellulitis and sent us home with an antibiotic (Augmentin). .. the exam that day was not very thorough and the doctor did not even ask us to follow up, even though the eye socket is very close to the brain.
As the day progressed, Sydnee started to throw up and just didn’t seem “right”. I called the hotline for the pediatrician and told her what was happening. The pediatrician was very short with me and clearly bothered that I had disturbed her. She told me that her symptoms were just a side effect of the medicine and not to worry. I slept with her that night, feeding her water every time she would move because she had not been going to the bathroom and I was worried that she might be dehydrated. It was that morning that I found her unresponsive.
After calling 911, I immediately started CPR but was not getting any response. Two slow breaths in, nothing. Nose pinched, head back, two more slow breaths…. no response. I was trying so hard to open her mouth that I ripped one of her teeth out. Still no response. The 911 operator started to break down when I screamed that she was still not breathing. He was hearing and feeling the weight of a mother who thought that her child was dead.
My mind was filled with so many thought s in that moment. How would I cope with the loss of my baby girl? How would my life be changed… would I become a shell of what I was before or would I have a renewed dependence on God? How would I tell my husband? How would I tell Sydnee’s 3 year old brother? What did I do (or not do) to cause this?
As these thoughts were bombarding my head within those seconds, Sydnee started to move. But not in a normal way… her hand began to curl and draw up and then her whole body began to shake violently. The first responders were coming in the door, much too slow. Sydnee was having a grand mal seizure. She was given Valium and oxygen and the seizure started to subside. We were put in the ambulance and on our way to the Greenville Children’s Hospital when the seizure activity started again.
Once we arrived at the hospital, we started the process of “figuring out” what was going on. Her kidneys had shut down and she could not breathe for herself. She was placed on a ventilator and given several strong anti-seizure medications through an IV. Meningitis was a suspect, so they did a spinal tap. CT scans showed a full sinus cavity but no other major issues (I later learned that a CT scan is not always an accurate test for the brain). As we waited for a room in the ICU, I had no idea what we were getting ready to face. We were unsure of what damage had occurred as a result of the seizure since it was so severe and the fact that she was initially not breathing. We did not know what long term implications her illness would have or if she would survive. I prayed that God would touch her body and reverse whatever damage might have occurred. I know He heard my prayers.
The next couple of days were an amazing yet trying time for us. Sydnee’s doctor walked in while we waiting for some explanation and I immediately knew that God was in this with us. His name was Dr. Avant, a strong Christian man that we had met 6 years ago while I was pregnant with Sydnee. We attended a class at his home on parenting and I knew that He was a man with great faith in God. I felt a peace when he walked into the room even though my world was nothing close to peaceful.
Dr. Avant told us that Sydnee’s kidneys had shut down- not from dehydration- but from toxic shock. She had contracted bacteria (most likely a form of strep) that were so aggressive that they produced toxins in her body and formed severe pockets of infection. At this point we did not realize that the infection had spread to her brain (thank God the treatment for toxic shock was the same treatment for brain abscess). We started an IVIG drip (blood product that binds the toxic effects from the bacteria and “cleans” the blood) and two strong antibiotics through IV (Clindamycin and Rocephin).
The time in the ICU was up and down… they installed a PIC line to deliver the antibiotics just above her heart. She had a blood transfusion and many other tests over the next couple of days since they were not 100% sure the diagnosis was correct. Slowly her kidneys began to function and they started to wean her from the ventilator. We decided it was time to take her off of the sedatives and allow her to “wake up”. This would be one of the hardest times. We didn’t know what state she would be in. We were told to be prepared for screaming and thrashing because her brain was still irritated from the toxins. As she slowly woke up, she screamed and jerked for two days and nights straight with short intervals of sleep. Because her state was so agitated, they decided to give her another IVIG treatment. Her lips were so severely chapped from the ventilator that they Kowasaki’s Disease and started the necessary tests. These were all negative.
Over the next week and a half, Sydnee started to come back. Slowly the anger and raging subsided and we were so relieved that she remembered us and seemed to have some memory of her life before. Each day was an improvement and the staff was amazed at how quickly was progressing. It wasn’t until the day before our anticipated discharge that we found out all was not okay. Her EEG came back abnormal and resulted in an MRI. Sydnee had a pocket of infection 16 mm x 6 mm on her brain. They immediately contacted a pediatric neurosurgeon (Dr. Troup) and a pediatric neurologist (Dr. Augusto Morales). We were also meeting with infectious disease doctors and had an amazing doctor (Dr. LaCroix). Since these abscesses are fatal if they reach a certain size and are often difficult to treat, we would start a series of MRI’s to watch the size. We would try IV treatment for six to ten weeks and monitor the size to determine if surgery was necessary.
These weeks were long and hard… waiting, wondering, praying…… not knowing. The first MRI showed no signs of size reduction. One doctor thought that it had enlarged. The following MRI’s were hopeful but not reassuring… the abscess was not getting larger but not really getting smaller. Finally, on March 8, the MRI showed that the abscess had collapsed. What a wave of emotion and rejoicing! After weeks of worry and anticipation, prayers were answered and Sydnee was on her way to recovery. The PICC line came out the next day and we started making plans for her to visit with friends from school.
I am often asked how I “kept it together” that first week of unknowns. I had already “lost” Sydnee on the floor of that upstairs room… my mind had started to process her death. The shear fact that we were at a hospital and there was a chance for her life to be saved gave me hope. The people who surrounded us while we were in the hospital and never let us be alone for more than a short amount of time demonstrated the power and importance of community. We had so many people taking care of us, praying for us (we were too weak), and setting up prayer groups in other cities with people we had never met. If you were one of those people who supported us, may the blessing you put on our lives be multiplied by thousands in your own life.
The doctors that were with us were not coincidental. Dr. Avant was a strong Christian man we had gotten to know 6 years prior. Dr. Troup was attending our church. Our pediatric life specialist was a dear friend from church who was once a pediatrician before changing careers. We were constantly reminded that we were not alone… someone greater than life was totally in this tragedy helping us make it through.
Although Sydnee now shows no signs of damage and is performing school work ahead of her grade, I still have struggles that creep in. She has to keep emergency seizure medication with her at all times since she is at increased risk for seizures. There are occasionally nightmares reliving those moments when I thought she was dead….. and those moments when I realize just how close we came to losing her. I have anger and frustration toward the doctors that saw her the two days before her seizure and did no blood work or more thorough exams. And although I have reconciled my feelings of guilt, I struggled for months with wondering what I could have done to prevent this from happening to our baby girl. Despite these struggles, I am a better and different person than I was on January 25, 2010. Many people have asked me how I have changed. Many of the changes are subtle and some not so subtle.
- I realize now more than ever that I am not in control. I think I am in control, but there is a power that transcends life itself. Within that power is the ability to take life…. And the ability to give it back. My meager attempts to control my own life are not even within the realm of this power that God possesses. And it is important that I acknowledge that.
- Community is no longer optional. I have always been a private person and not always the first person to seek out community. I realize now that needing others does not make me weak. It is part of God’s plan for my life.
- God loves our children more than our feeble minds can comprehend. If He had chosen to take Sydnee’s life, His purpose would have been right and just. But God spared Sydnee’s life. He is merciful and does hear prayer, even from those who are not perfect.
- The picture of the Son dying on the cross has a deeper meaning to me now. The intensity of that situation is magnified because I have felt the hurt and pain from almost losing a child. What a sacrifice!
I have heard that in order for God to truly bless you, you must be broken. I was broken… and I was blessed because of it. I feel that God has revealed Himself to be a present, active God that isn’t some floating cloud. He is in our lives, acting. He is working out all things for the good of those who love Him. I would rather have the comfort of knowing God exists in the midst of tragedy than living a life without tragedy and never truly experiencing His presence. Although that statement scares me and I will never fully comprehend the meaning of God and why He works the way He does, I know it is true and I know that HE is true. And I have accepted that “not understanding” does not mean that I do not believe.