Saturday, March 2, 2013

Bailey's Story

When My beautiful friend told me her story I knew that it needed to be told again and again. It is proof of what a little seed of hope can grow into.....

Only twice in my life have I ever had dreams about my father. He passed away when I was three. I remember waking up from the strangest dream about him. Like most eight months pregnant women, I woke up to once again waddle to the toilet. Slowly lowering myself onto the toilet I had a gush of water. I was startled by this unexpected gush; it was gushing out with each move I made. I yelled for my husband saying, “Kyle, my water just broke! This is it.” He rushed into the bathroom sliding in the amniotic fluid and slid into the wall. I started laughing hysterically-- it was like something from out of the movies. As I laughed, more and more water was rushing onto the floor. I stood in the bath tub barking out orders to my wide-eyed hubby. Thank goodness our bags were already packed from a labor scare the day before.

We arrived to the hospital where the nurses checked me and tested the fluid to make sure it was amniotic fluid. (So silly and a waste of time, I thought. This was my third baby and I knew what water breaking felt like). However, I was only one cm dilated, had very small contractions, and our sweet baby girl was still moving around. Hours later and still I was progressing slowly.  My doctor came in all smiles. She gave me the decision that would forever change my life. She said I could stay in our local hospital and deliver our baby, go to a bigger hospital locally, or to Dallas. Her reasoning was that I was progressing slowly and if I needed anesthesia for any reason they would have to call the “on call doctor”. It could take him to an hour to get there. I talked it over with my husband and we both agreed to go to Dallas.  We wanted to be so careful and I wanted the best for our little girl.  We took the ambulance to Dallas and got into our room. The meds where started, pushing me deep into labor and then I had the wonderful epidural. My mother and my best friend had arrived and were patiently awaiting Bailey’s arrival.
After around 36 hours of labor I started pushing. Our doctor stopped mid push to tell me Bailey’s head was tilted and she would need to use forceps to pull her out. She explained that if we didn’t I would need a C-section. As she proceeded to pull Bailey and turn her, she said “I see hair.” I pushed with all I had and out Bailey came. The doctor laid my baby onto my chest and all we heard was silence. Bailey wasn’t crying and I touched the top of her hair and said in a panic, “She is not crying!” That is when everything went crazy.

Someone grabbed my baby from me. A wave of people flooded my room. A tall grey-haired doctor began working on my beautiful, lifeless baby. He pumped her chest and from time to time he said breath. I counted each time he said breath. It was a total of three. I looked to my family in the room and saw sheer terror on their faces. Everyone was so still. No tears, no words, no comfort. The OB was still between my legs working and was not looking towards my baby. This is not how it was supposed to be. My husband was supposed to be cutting the cord. I was supposed to be counting her fingers and toes. Instead they were rushing her from the room. My husband was close behind. I’m not at all sure where time went from there.
I know my best friend left, my mother was with me, and my husband was not. I think someone must have told me they were taking my baby to the Children’s hospital next door to be placed on a cooling blanket. I remember the nurses not looking me in the eyes. I remember the room they put me in. I don’t remember time. I felt like I was watching myself from some other place; this wasn’t my life. This was a nightmare.

All the while my husband was dealing with the worst moment of his life all alone. He told me later how Bailey flat lined on the way to the hospital. This was the second time our daughter died.

Some women were parked in the medic bay and the ambulance took off their mirror. They were yelling at the ambulance and my husband yelled “That’s my daughter in there!” He sat outside of the ER room where doctors and medical staff worked diligently on Bailey. People kneeled down in front of him checking on him. I’m sure he was in a hellish daze; the Chaplin was brought down to comfort him.

A doctor finally came and spoke to my husband. She explained that Bailey had suffered a severe hypoxic event. It happens to 1 out of a 1000 babies. There is no reason for her to be basically born dead. She had a heartbeat all through labor. The moment she came out, she stopped breathing. A child that is born with lack of oxygen suffers a condition called Hypoxic-Ischemic Encephalopathy (HIE).  The doctor told my husband about how that lack of oxygen most definitely will have affected her brain. She also said that Bailey had a 50/50 chance of making it that night. My husband asked her about placing her on the cooling blanket and what that meant. The doctor asked what time Bailey was born. Kyle said almost 5 and half hours ago. Knowing that a baby needs to be put on the cooling blanket by 6 hours of age to reduce brain damage up to 20%, the doctor rushed out to get our baby started. The cooling blanket basically puts a baby into hypothermia thereby reducing the damage and helping prevent cells from dying. The child’s core temperature is lowered to between 33.5 and 35 degrees Celsius from the normal temperature of 37 degrees. This process takes 72 hours.

I eagerly awaited my husband. I’m not sure what happened in those six hours my husband was away. I don’t remember if I even spoke a word. I was in complete panic and terror. When my husband finally returned, he was pale and frail looking. He was forever changed. He explained to me what all had happened. We were in shock; all we had was each other in this horrific moment. I melted into him; I thought about what a good man he was and how all I wanted was to share our love with our child, how he deserved to be a father. I was hysterical on the inside. I’ll never forget that at the moment I was questioning internally Why, God, is this happening?, a nurse walked into my room. She started asking if I was okay. I told her how our baby was only given a 50% chance of living through the night. She said “You know what? You got yourself a praying nurse tonight. If you would like we can pray together.” My husband, the nurse, and I formed a circle of hands and she prayed aloud. She prayed that God’s will would be done and prayed for strength for Kyle and me. What I wanted to do was fall on my knees and pray for my baby-- the baby I had carried and dreamed of for the past 8 months. The baby whose room my dad had painted the perfect shade of pink. Her little swing that I put together and the crib her big brother helped build.

Each hour that we hadn’t received a phone call was another hour my baby was alive. That was the longest night of my life. I was still feeling the effects of the meds and the exhaustion of labor. I think I slept; I’m really not sure. What I am sure of is we didn’t receive a phone call that night. By the next morning, Bailey was off all heart medications and had experienced no seizures. Seizures go hand in hand with brain damage. They can be a side effect of brain damage and they can cause more damage as well. I felt that tiny seed of hope grow. My husband went to visit Bailey as did as our family. I got to see pictures of my beautiful baby girl. A nurse had put a crocheted pink flower on the side of her mask. She looked like a little girl. She had round chubby cheeks and her daddy’s toes. Her little body was bruised from the CPR and she was intubated for safety. She was on room air which was wonderful. I got to watch videos of her daddy talking to her. She would move her feet when she heard his voice, just like when he would talk to her in my tummy.

I couldn’t even process the emotions I had. Where to start?  I was angry that I wasn’t with her, happy she was here, jealous others where with her, sad, so so sad, exhausted, and fearful. I tried to just make it, tried to push myself to get up and walk. I started pumping milk for Bailey. The only thing I could do for my precious sick baby was make her milk.

Doctors came and went. The doctor that delivered Bailey came to see me. She had a few others with her in a team. I’m guessing she must have needed support as well. She came and held my hand and told me she was a realist and that something would be wrong with Bailey due to her time without oxygen. I just nodded and thanked her for doing all she could. I just wanted to be alone. Every moment I had to talk to someone was a moment I was not praying and begging God for my daughter’s life.

Nothing else mattered but my endless rambling prayers and making milk. It was day two, the day I would get to meet my baby. I still had the IV in my arm as my mother-in-law supported my shaky body down the long stretch of the hospital. It was a beautiful hospital just for children, filled with bright colors, butterflies, and twinkling lights that looked like stars. It was the longest walk of my life. I wanted to run to Bailey. We went through the security of the NICU. Walking through the automatic doors, the first bed on the left was Bailey’s. I turned the corner and there she was. She had her little arm sticking straight up in the air and it looked like she was waving. My mother-in-law gasped and said, “Look, she is waving!” Inside the little bed was my sweet baby.

She had tubes going everywhere. Machines beeped and flashed. I can’t describe how she looked after having two rounds of CPR. Her head was scabbed and shaved on each side where they tried to insert an IV. My heart was beating hard as I got to touch her little hand. The soft baby skin of her hand was so perfect. I got to count her little fingers and toes. I was so afraid to breathe and time was racing by. My hospital had only given me two hours to go visit my Bailey. It’s the most horrific feeling walking away from your baby. There is nothing right about it. Every part of my body ached for her. I shouldn’t be walking out the door. Bailey should be with me, nursing and sleeping. My hospital room should be full of balloons and flowers. People should be calling and coming to visit, not me heading empty back to my hospital.

This night I screamed and cried for my baby. My body shook as I cried hysterically. My IV had blown and the nurses wanted to put a new one in. That seemed so minute compared to what was happening to my baby. I was angry. So I prayed. This was the night I started meditation. I would picture in my head God’s light healing my baby. If I couldn’t be with her I would send my constant prayers.

The next day Bailey was taken off the cooling blanket and the vent. I got to hear her little cry. The most natural thing, it was what she was supposed to be doing!  Crying!  Her little face and body had started to swell from all the medications and her color was getting a bit darker. She was urinating blood and her lab work was starting to look bad. Her doctor had an EEG done on her little brain. It showed normal brain activity and no seizures! My husband and I were so excited. The doctor gave us a sad look and said, “Yes, this is good but we are not out of the woods. I have a feeling that her MRI will not be good, and I’m sure she will start to have seizures.”

Our little seed of hope and happiness was quickly dashed away by the harsh words. I prayed. Bailey soon got worse. We had a meeting over her MRI. They told us how damaged her brain was. That she would most definitely have cerebral palsy and seizures, that she would not be “normal,” and that she could still die at any time. That night my husband basically had to carry me out to the car. My legs felt like Jell-O. This nightmare had somehow become hell. As my sweet husband wrapped his arms around me and held me, I felt a hand on my shoulder. It was the doctor. He helped my husband get me to the car. He said “Pray.” God had sent him to help my husband in that moment to pick me up. He had been the one to deliver the news, but God had sent him to remind me it wasn’t up to the doctor. Bailey was in God’s hands. The doctor urged me to hold Bailey. I didn’t know that I could. I was afraid it would stress her out. He said “What she needs is to be held by her mother. There is nothing better.”

The thought of holding my baby got me through that night. It seems that when you have an extremely sick child it’s the little moments that keep you going. I learned to live for those moments.  Though we may have been in the hospital, in my mind we were home. I got to hold my sweet baby. Finally I kissed her little forehead. We could see the dimples in her shoulder blades. We debated over her nose and her lips. I had never been more in love with my husband than in that moment. We were a family.

Bailey’s lab work continued to get worse. Her liver was failing and possibly her kidneys. Her stomach was possibly dead from the lack of oxygen. We didn’t know because she had only had IV fluids and no milk. Her heart had two holes in it from not taking the initial first breath a baby takes when it is born. When a baby takes that first breath it closes those holes. She was having problems with her white blood cells and clotting. She was receiving blood products and was put back on the vent. Her bilirubin's were extremely high from the liver problems and she was turning neon yellow. One nurse practitioner stated that Bailey was the sickest baby in the NICU. I sat next to her little hospital bed. I prayed. I meditated envisioning God healing each new part of the body her doctors said was failing.

The only bright spot we had was the nurses. Each day a nurse would let us have some little bit of normalcy. My husband got to change a diaper for the first time. I got to pick out Bailey’s socks. We got to suction her nose and check her temperature. Every three hours we had touch time. Though we were helping medically, it gave us a deeper purpose.

Around this time is when we started getting the “Looks”. The staff would try to avoid our gaze or have this pity look on their face with a fake smile. I avoided rounds in the morning. I wanted to hear what was going on just from the nurse, not a whole team of doctors with no bed side manner. Hours and days ticked by.  We became pros at watching the monitors. I held our sweet baby as often as I could. Her little body was so swollen and yellow. I found ways to comfort her by stroking her hair or kissing her forehead. My husband sang to her (sometimes a bit too loud, lol), read to her, and cuddled her. Her blood work got worse; it was possible kidney and liver failure. Her doctor ordered an ammonia test to see basically how fast her cells where dying.

I looked on the internet to find what normal ammonia levels where. I waited patiently, okay, not so patently for the results. The nurse told me the number. I knew before she could tell me that it was in normal range! The test to show how fast she was dying was NORMAL! As I walked to the elevator I ran into her doctor. I was so excited I’m sure I was rambling about the test and how happy I was. She gave me “the look”. My heart went into my throat. She said “Will you be back in her room in about an hour?” I said “Yes, of course.”

An hour later I walked past the nurses’ station. Bailey’s doctor was sitting at the desk. She was crying. I looked down to the floor praying for whatever baby this doctor was so upset about, thinking this couldn’t be my baby. Soon she rounded the corner and entered our little room. I was holding Bailey’s hand and my husband was on the other side of her bed. In that moment I wanted the truth. I didn’t want to continue with this back and forth of info. This is good and this isn’t, but this is okay but maybe this test will show this, blah blah blah. The doctor sat next to me with tears in her eyes. I asked her the question no parent should ever have to ask. Is she dying? Her doctor said “I believe she is.” I asked “Is she in pain?” The doctor said, “I think she is suffering and it would be the humane thing to take her off life support.” I couldn’t breathe. I felt nauseated. I cried looking at my baby sleeping so sweetly even with the monitors beeping. The doctor said that liver failure is a horrible death. She told me how she had treated other patients in this situation and there wasn’t a good outcome, and that since Bailey had brain damage she would never qualify for a liver transplant.

My husband and I wept and held each other. We took turns falling apart and being strong. We made the calls for anyone who wanted to meet Bailey that this would be her last weekend with us. Our friends and family came. Everyone, including us, spent as much time with her as possible in, what we thought, would have been her last 2 days on earth. Bailey’s nurses helped us make foot prints and hand prints. It was such a normal thing to be doing with your baby. My husband decided he would get a dedication tattoo of her prints on his arm so she would always be with him. I was empty. I was dying on the inside. I couldn’t eat. I stopped pumping milk. Why should I pump anymore? She would never drink it. I struggled with every breath. This isn’t real. This isn’t right. Nothing will ever be right ever again.

Sunday night we sat in Bailey’s room watching her every movement. The night nurse was talking to us about our decisions. I wanted to know how it would all happen. She explained to me they would put us in a private room. They would make her comfy on meds and let her pass. We could bring her little clothes and her blankets with her sweet name Bailey Faith monogrammed on them. We could give her a real bath and put lotion on her skin. The nurse said if I wanted I could hold Bailey as she passed. I told the nurse that I brought Bailey into this world and that I would hold her as she left. I know it sounds odd but the thought of dressing her and bathing her gave me such comfort. I could enjoy my baby for a minute. We could take pictures of her sweet face not covered by the vent. We would be able to kiss her and smell her hair. We would be able to kiss her little toes and cuddle her little body.

Our mothers decided they would be there as well. I told them I completely understood if they couldn’t be. I would never ask anyone to witness what we were about to. The nurse called for funeral pamphlets to be delivered by the morning.

Monday morning we were to have our “Care” meeting. I hate that they named those meetings “Care”. I woke up from a restless night of sobbing and nightmares. Kyle called my original OB and had her call in a prescription for me in case I needed to be calmed. I have never screamed in my head before. I screamed at God in my head! I screamed that this wasn’t what was supposed to be happening. This wasn’t right. We were good people. My husband is an amazing step dad and husband. I wanted to give him a healthy baby-- not any baby, THIS baby. I couldn’t understand how the world could still be going on as normal as could be while this tragedy was happening. How could people be laughing and smiling when this was happening!?  I was empty. I had nothing to say to anyone. I called the hospital to check on how Bailey’s night had gone. One of our normal nurses answered. Instead of her saying the normal that Bailey was “ok”, she said “You need to be here for rounds this morning. How fast can you get here?” I told her we were on our way.

Kyle, his mom, and I walked into Bailey’s room right as the cluster of doctors rounded the corner. They went through their normal routine of her list of complications and birth. Then they went to her blood work. My mother-in-law was holding Bailey. We where half listening to the doctors when we heard the words I will never forget. Her liver has improved! The doctors all looked up from their computers to see our reactions. They confirmed it again and again and probably again. Her liver had started to heal itself over the weekend! The same doctor who advised on Friday to take her off life support stated that she had never changed her mind in her entire career until now.

That moment forward we could see the miracle unfolding. We all three sat there staring at each other for what seemed like hours. This is our miracle. The charge nurse came to us and told us she had only witnessed one other miracle like this in 20 years. After the liver starts to heal it rarely goes back. From that day forward Bailey was in control. She healed her liver. She came off the vent. She started eating and then pooping! Her stomach was working. She started opening her eyes. Bailey would cry and wanted to be held. All the things a healthy baby would do. Bailey did. She could track things with her eyes. She held our fingers. We could smile again.

So, even though we were told there is a chance she would live, which we were so thankful for, Bailey’s doctors still gave us the constant doom’s day speeches about how she would have severe mental issues and/or physical disabilities. At around week 6 a doctor measured her head and it hadn’t grown a centimeter. He said she would never walk, talk, eat on her own, would basically be in a vegetative state, and would be in a wheel chair. However, over the next two days her head grew! She started slapping at toys! So we bought more and more toys, anything that could stimulate her brain. I will never forget in our MRI meeting the doctors kept telling us how horrible the news of her brain was. All we asked was “Will she live?” The head doctor said “Well yes.” My husband said “That’s all we need to know.”

The doctor didn’t think we understood, but we understood perfectly. When you have been faced with a life without a child, things like normal tests results don’t matter if they are livable. My husband told the doctor that it was okay: he would be the biggest cheerleader they had ever seen at the Special Olympics! I still at times envision him in a skirt and pompoms.

Ever since the decision from week 2 not to take her off life support, and to give her a chance to live, her organs kept improving.  Lab results, while still in a cautious state, started to slowly improve, which made doctors and everyone agree that she really was going to survive. Slowly, over the course of being in the NICU from week 2 to week 7, medicines to keep her alive started going away, including blood products, nutrition IV’s, and anything else that was keeping her alive. She started feeding on bottles, started receiving physical and occupational therapy in the hospital, and the therapists were blown away by her progress because of what she went through.

Bailey had an NG tube, which is a tube that went from her nose into her stomach. We were advised that it would be best to have a surgical procedure to where there would be a hole made into Bailey’s stomach that a machine would hook onto to. This would feed her. I thought about this and it didn’t seem right. Every time we had given Bailey a chance to do something, she did it. They hadn’t even worked with her on bottle feeding but two times! I understood the risk in both but after her rough start there was no way I wanted to have surgery without giving her a chance. So we started speech therapy. It was slow but she was taking milk. We had a swallow study done and she was drinking perfectly.

Cardiologists started coming into the picture around this time. It was around week 6, and the holes in her heart have not closed. Normally they do by now and after this age don’t close on its own. The doctors thought that we would need to have a surgery done involving a small catheter to close the two holes. A few days later, an ultrasound was preformed. Guess what?!?! One hole had closed itself and the other closing as well.

By week 7, it was agreed by all doctors and therapists that Bailey was healed and recovered enough to go home. I finally got to nest. I went home and washed everything that would stay still long enough to let me clean it.  I rewashed her little pink sheets and footy pj’s. I arranged her toys. It was one of the happiest moments of my entire life, cleaning for Bailey.

Around week 8 Bailey came home. She came home to her two older brothers and her pink room. (She has never slept a night in that room.) Upon discharge nursing was arranged as well as therapists. Nursing came one time to make sure we were comfortable inserting her NG tube into her stomach. Physical therapists came and played with her and watched her. They decided she didn’t need therapy. We thought that when we left the hospital our lives would be constant therapist and doctor appointments. The only therapy she received was speech to help her with bottle feeding. At five months she was completely orally feed. She was discharged from cardiology right away with no more holes in her heart. Her liver is normal, just annual tests. She only has one kidney but as the doctor explained, millions of people walk around every day with only one and don’t even know it. Her kidney is growing with her.

Bailey is now 10 months old. She has met every milestone on time. She crawls and sits. She drinks bottles and eats food. She plays with her toys. Bailey said momma at around 5 months, followed by dada. Now she says baba (for bottle), momo (for no, no) duh duh (for her favorite bath toy, a duck). She has recently started pulling up to her knees and she can push her baby walker. Bailey will walk and she will talk. She knows who her momma and her daddy are. Lol.  I still pray every day but boy, have my prayers changed. We don’t know what the future holds for Bailey but when we go to her doctor appointments, they call her the miracle baby.


Writing my daughter’s story was one of the hardest things I have ever had to do. The reason I agreed to write it was to give hope. In our darkest moments I would have given anything for one story of hope. I hope her journey can help not only others going through this but also prove what God’s power can do when we pray.

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Thursday, February 28, 2013

Rare Disease Day 2013

Here is a video that I made of the miracle children of Texas and what they dream about

Rare diseases (also called orphan diseases) affect approximately fewer than 100,000 children in the United States, and there are about 7,000 known rare diseases that have been identified. It is estimated that about 80% of rare diseases are genetic, and that 95% of rare diseases do not have a single FDA approved drug treatment.  Many rare diseases Like Mighty Z's are too rare for research. What does this mean? It simply means that since rare diseases affect relatively small numbers of people, companies are not always able to recover the expense of making the drug without government assistance. So, Mighty Z  who has a  rare diseases are left with just treating the symptoms. As a mother of a child with a rare disease all I can do is wait and pray that someone will come along and be inspired to help find a cure Mighty Z's disease.

Mighty Z's disease is genetic her PHOX 2B gene has repeated (that basically means that she has too many of that PHOX2B gene).

The PHOX2B gene provides instructions for making a protein that acts early in development to help promote the formation of nerve cells (neurons) and regulate the process by which the neurons mature to carry out specific functions (differentiation). The protein is active in the neural crest, which is a group of cells in the early embryo that give rise to many tissues and organs. Neural crest cells migrate to form parts of the autonomic nervous system, which controls body functions such as breathing, blood pressure, heart rate, and digestion. Neural crest cells also give rise to many tissues in the face and skull, and other tissue and cell type.

So what does this mean? It means that Mighty Z has to many neurons buzzing around that sometimes doesn't know where to go or what to do sometimes they carry out their function and sometimes they do not.

It also means that Mighty Z's disease (even though she is on a ventilator) is not a lung disease, but a neurological disorder and it affects every aspect of Mighty Z from breathing to her bowels there is very little of her body that is not affected by CCHS (congenital central hypoventilation syndrome)

 My favorite quote is from the Rare Disease Day Foundation: “Together we can make a difference . Alone we are rare. Together we are strong." I will tell you that all of your support during this journey has made me stronger just knowing that I am not the only one praying for my Mighty Z.

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Tuesday, February 26, 2013

Keeping My Respiratory-Comprised Child Healthy During RSV Season

I was excited and scared when we finally got to bring our youngest daughter, Mighty Z, home from the hospital.  It had been six long months since she had been born with Congenital Central Hypoventilation Syndrome (CCHS), and during that time she had been trached and vented. Before the hospital would allow us to bring Mighty Z home, they prepared us to care for her and taught us how to troubleshoot problems that might arise.  Her doctors and nurses made sure we understood how important it was to keep Mighty Z, a baby who had been intubated and was still trached and vented, away from every contagious “bug” that tried to bite her.  RSV, the flu or even the common cold, could result in not just sickness for Mighty Z, but in her death.

Handwashing Is No Joke

As Mighty Z’s primary caretaker, it was up to me to keep her safe in a sneezing, coughing, runny-nose world, and I took that responsibility seriously.  After her long-awaited homecoming, everyone who graced my threshold was interrogated as to whether they had a fever, a cough, the sniffles or anything else that might land Mighty Z back in the pediatric intensive care unit (PICU) before being allowed inside our home.  Those who gained entry to the foyer were requested (instructed!) to remove their shoes and sanitize their hands before they could go any deeper into the house.  Despite my precautions, I knew it was impossible to keep all contagious illnesses away from Mighty Z, and I lived in fear of one illness in particular, RSV.

Educate Yourself About RSV

Though RSV infection can occur in people of all ages, preemies, infants and very young children are particularly susceptible.  Older children who are infected with RSV usually have only mild, cold-like symptoms such as a cough, stuffy nose or low-grade fever, while infants under age one are more likely to experience more severe symptoms that result in trouble breathing.  A child who has been trached and vented, or even intubated for even as little as one day, has scar tissue from those procedures in the lungs.  That scar tissue makes such children especially susceptible to having an ordinary childhood illness become something substantially more catastrophic than it might otherwise.
Outbreaks of RSV begin most often in the fall and run into the spring, and the virus is spread through tiny droplets that go into the air when an infected person blows their nose, coughs or sneezes.  In general, RSV symptoms usually appear 4 – 6 days after coming in contact with the virus, and they include:
  •       Bluish skin color due to a lack of oxygen (cyanosis);
  •       Breathing difficulty or labored breathing;
  •       Cough;
  •       Croupy cough (often described as a “seal bark” cough);
  •       Fever;
  •       Nasal Flaring;
  •       Rapid breathing (tachypnea);
  •       Shortness of breath;
  •       Stuffy nose; and,
  •       Wheezing

Antibody Shots Buy Time

Even healthy, full-term babies and toddlers can wind up with a breathing tube and on a respirator due to RSV, and her doctors knew what it could do to a child like Mighty Z who had scar tissue in her lungs as a result of the respiratory treatments necessary to care for her rare disease.  In order to help keep Mighty Z RSV-free, her doctors prescribed monthly Palivizumab (Synagis®) shots for her between the ages of 6-months and 24-months, after which point her doctors felt she would be “out of the woods” and better able to fight infections.  Synagis®, a man-made antibody to RSV, is costly both to obtain and to administer, as it is typically given in the Synagis® clinic at a pulmonologist’s office.  In my experience, it costs approximately $1,500 per dose now compared with about $3,000 per dose 10 years ago. Because of the cost, our insurance didn’t want to pay for Mighty Z to get monthly Synagis® vaccinations, and it was only after much arguing that I persuaded our insurance company to pay for the cost of the antibody itself.  There was a catch, though, as their agreement to pay for the antibody cost was conditional upon my agreement to administer the vaccinations to Mighty Z myself instead of taking her into the pulmonologist’s office every month to get shots.
After we negotiated our agreement, once a month our insurance company sent a syringe and two vials to our door.  One of the vials contained powdered Synagis®, and the other contained sterile water.  I mixed the powdered Synagis® antibody with the sterile water to reconstitute the shot, drew it up with the syringe, and then gave the shot to Mighty Z once a month.  Although giving Mighty Z her monthly Synagis® shot was almost unbearable (giving your own child a shot is even worse than watching someone else do it), I did it anyway.  Even though Mighty Z and I both hated the shots, I knew she needed them.

RSV is Serious Business for Respiratory-Compromised Children

Big Z, Photo courtesy Colquitt FamilyWhen Mighty Z turned two, I was over the moon! Not only had Mighty Z doubled the one-year life expectancy her doctors had foretold when she was initially diagnosed with CCHS (Yippee!!), but also I would no longer have to give her Synagis® shots (Yay!).  Unfortunately, my elation about no longer having to give Mighty Z monthly shots was short-lived, as she became infected with RSV after only a month without shots.  Though she had to spend the next two months in the PICU fighting for her life, Mighty Z won her battle.  Looking back now, I believe that Mighty Z survived RSV infection at age two because of the precautions undertaken to keep her RSV-free until she was old enough and strong enough to win the fight.
If your child has ever been either intubated or trached and vented for any amount of time, tell your guests with sniffles that you’ll see them later. Require those that make the cut to take off their shoes and wash their hands, and put on your chemist and nurse hats to administer RSV shots if prescribed by your doctor and that’s what it takes to get the cost covered.  In short, if your baby has ever been considered medically fragile, sometimes you’ll have to do whatever it takes to increase your child’s chance of beating the bugs.

Respiratory Syncytial Virus – Accessible from PubMedHealth, A.D.A.M. Medical Encyclopedia, U.S. National Library of Medicine on September 20, 2012.
MedImmune – RSV Protection - This website, which is sponsored by the maker of Synagis®,  provides information about RSV including who is at risk, how to prevent the virus, and when RSV season occurs.01 02 12