The sole purpose of this story is not to offend anyone with our beliefs, opinions, or our medical treatment choices but to share with you our journey with our beloved Courtney. Please read with an open heart and mind. We hope the story will help you understand our deep love and devotion for Courtney and let some of you know why we don’t stay in touch with you all as often as we would like to.
Caring for Courtney: a love story
Courtney Brooke Rosas was born on Palm Sunday, April 13th, 2003. I cut her umbilical cord. She didn’t cry at first but she finally did and it was a very soft cry but music to this first time Grandma’s ears. She had platinum blonde hair and blue eyes. We brought her home and looked forward to having a wonderful life with this beautiful child.
When Courtney was about six weeks old I noticed she didn’t move her legs anymore. They lay open like frog legs and she wasn’t trying to raise her head or push up with her arms. We took her in to the pediatrician a little early for her two month check-up. The doctor that we saw on this day didn’t seem worried and said that Courtney was probably just a lazy baby and when we take her back in for her four month check-up, she would examine her again. We went home and continued our lives as usual. My daughter, Candace (Courtney’s mom) and I especially liked going out with the baby to show her off. By now Courtney’s hair had started turning red, and she would get even more attention. She has always been so beautiful! She got her hair color from my mom and she looks like me when I was a baby. She also has my blue eyes. She couldn’t hold her head up so she would lie on our shoulder and smile at people, they would just think she was sleepy.
We went for Courtney’s four month check-up expecting to be told that the worst that could happen would be that she wouldn’t be able to walk. We saw a different doctor this time. When she examined Courtney we told her about our last visit and I told her how the baby had lost her milestones like pushing up and wasn’t trying to do things that babies her age do. She went to get the head pediatrician and he told us we needed to see a neurologist as soon as possible. A few days later we went to see the neurologist and she told us that Courtney could have one of two things, the worst being Spinal Muscular Atrophy. She would need to get blood from the baby for a genetic DNA test to determine this and it would take time before it would come back because it had to be sent to a special lab in another state. She wrote the names of the diseases down and said to go home and read about them. She would send a recommendation to Early Childhood Intervention to start physical therapy as soon as possible. Vicki, our therapist came out right away and started different exercises to help Courtney. She is such a loving and kind person. She made recommendations to start speech therapy and also there would be a nutritionist to come out to monitor Courtney’s weight and calorie intake. Vicki even made arrangements to get a loaner wheelchair for Courtney to use until we could get an approval to get one of our own. My husband Manuel “Grandpa” loved taking Courtney outside in it to watch the cars go by.
Before the test came back Courtney couldn’t swallow one day. She was so hungry but would cry when she tried to swallow and was choking. A few days before we had started feeding her applesauce and she loved it so much. But this day Courtney would turn her head and cry. She wouldn’t suck her bottle either. We rushed her to the emergency room. She was admitted and a tube inserted in her nose to her stomach so she could eat. While we were in the hospital we finally got the results of the DNA test. We were told Courtney has Spinal Muscular Atrophy Type 1, the most severe form of the disease and that all Courtney’s doctors were going to have a meeting with us in the hospital conference room. Candace and I were in shock. I had read a little on the internet about this disease but I would start crying and think surely nothing this horrible could happen to our Courtney. We had never heard of any genetic diseases in our families. We were told that both of Courtney’s parents were carriers of the SMA gene. She will never be able to lift her head or accomplish normal physical milestones. She now could no longer swallow and would have to be suctioned constantly because of her secretions. Her chest would start to sink in because of her weak respiratory muscles. She would have to be turned every two hours for the rest of her life because she can’t do it herself. She would get scoliosis of her spine. Candace sat quietly, looking at her own tiny hands. I felt so helpless and cried as the doctors took turns telling us what to expect and the prognosis. They said our baby will die before she reaches her second birthday. One doctor said most parents just take their baby home and keep them comfortable and let them die. Another doctor said that recently some babies get a tracheostomy (a tube placed in their necks so air from a ventilator can breathe for them). It’s called life support. And there hasn’t been much data gathered as to how long these babies live.
They explained there also are less invasive alternative treatments but Courtney will need the tracheostomy because of her severe secretion problems. And that if we want “do not resuscitate” orders written for Courtney. Oh my God, I couldn’t believe what we were hearing. It’s like we were in a horrible bad dream. Courtney is so happy and beautiful, how could he suggest that we let her just die? They said it will be a lot of work and take a lot of time. The same doctor that seemed to want us to just let Courtney die said that we would have to let them know just how far we want to go with this.
This isn’t a decision that I could make for Candace, she is Courtney’s mother. I could only give her my opinion. This is something she would have to live with for the rest of her life. I knew that God gave me four wonderful children and one granddaughter and I would do whatever I could for them as long as I have breathe in me and strength to move. But this was something I couldn’t do. I knew Candace would make the right decision. Just like when as a sophomore in high school she became pregnant with Courtney. From the moment Candace found out she was pregnant she always loved and wanted Courtney. She never considered abortion or adoption. She chose life for her baby then and I knew that as long as Courtney was not suffering in pain, she once again would choose life for her daughter.
My family wasn’t happy about Candace being pregnant at such a young age and not being married but we never tried to hide her pregnancy. We told all our friends and family. I was happy to be a grandma no matter the situation. Our family always pulls together in times of need and we all supported Candace in her decision. The parents of Courtney’s father said no to marriage, so Candace would continue to live at home with us along with her baby. Candace and I got busy getting things ready for the baby. We sponge painted tiny pink stars on the white walls in her room and she chose the theme of ballerina’s and ballerina bears for the room they would share. She made a frame with the saying “Angels danced the day you were born” to go with her dancing ballerina theme. We never dreamed that her soon to be born baby girl would never walk or dance.
The day before Courtney’s G-button (feeding tube) surgery we had the priest at the hospital baptize Courtney. Candace had asked her long time friend, Melissa to be Courtney’s godmother. Candace signed the papers for the surgery to place a G-button in Courtney’s abdomen so she could have a permanent way to be fed. The baby did well after the operation. We soon went home with a feeding pump and a suction machine. We had a nice Thanksgiving and Courtney’s first Christmas was great. Candace had a tree in their room for Courtney. It was full of pink decorations!
After the New Year we were beginning to have to suction Courtney more and more. That January we had to go to the ER. again. Courtney was beginning to stop breathing and we couldn’t get out all her secretions down the back of her throat. While we were there nurses taught us how to deep suction down her nose. We were taught C.P.R. before we went home. The same day we arrived home Candace had to perform C.P.R. on her baby. Things started getting worse for Courtney. By the first week of February we had to take Courtney back to the ER. She stopped breathing while we were at the hospital and the doctor said that we couldn’t wait any longer; we would have to do the tracheotomy now.
Candace once again had to sign permission papers for surgery for her little daughter. She was crying as she did so and asked the doctor if her baby would be able to talk with the trache because she wanted so badly to one day hear Courtney call her “mama.” He told her maybe with a speaking valve someday she would.
We didn’t know if our little baby with the bright orange/red hair would make it through surgery this time. But once again she showed us how much courage and inner strength she has. During the surgery she was put on a ventilator (a machine to breathe for her/life support). After the surgery Courtney was not able to be weaned off the vent and oxygen. She would now be transferred to a small children’s convalescence home to try to be weaned off the ventilator and the oxygen and to teach the family how to care for the trache and learn how to use the vent. We were supposed to be there for two weeks but ended up staying for two months. Courtney kept getting infections, she even had R.S.V. twice. I rarely left her side. I spent many hours each day reading and playing with my pretty granddaughter. I loved every precious moment!
Courtney had to celebrate her first birthday at that hospital. She was finally discharged the first week of May, 2004. Candace was pregnant again by this time. She had been having an on again off again relationship with her boyfriend. The new baby girl would be born in September and there was a 1 in 4 chance that she also would have the same disease as her sister; a 1 in 4 chance that she wouldn’t have it and a 2 in 4 chance of being a carrier (someday passing it to her children). Courtney had a good summer. Although Courtney can’t talk she does what we call singing “ahh, ahh.” It sounds like angels singing to me.
It was quite a job organizing all the supplies and equipment but Courtney gets a home health nurse a few days a week and that helps out a lot. Candace and I were always getting my husband “Grandpa” to hang things or build something to help make taking care of Courtney easier. Courtney usually gets sick once a month and has to go to the hospital. She only goes to the doctor and hospital by ambulance.
Candace stays tired all the time because she has to set her clock and get up every two hours to turn Courtney, get the water out of her tubing, fill her feeding bag and fill her heater chamber. She works so hard taking care of Courtney; she is such a good mother. I do a lot for them but I think nothing of it because it brings such joy to me to be able to do anything at all for my precious Courtney.
In September Courtney was in the hospital again and a central line had to be placed in her chest so she will have a way of getting IV antibiotics because it was becoming impossible to get a vein anywhere in her tiny body. Just a few days after Courtney came home Candace went to the OB/GYN doctor for her check-up and was told that her blood pressure was high and that she would have to have her labor induced. Candace had a lot of pain with this delivery; it didn’t go as fast as it did with Courtney. The baby was having trouble with her heart beat and things didn’t look good for a little while. I cut this grandbaby’s umbilical cord as well.
Kendall Taylor Rosas was born on September 25th, 2004 just thirteen minutes after my husband’s birthday. The hospital administrator agreed to let Candace and the baby go home in just twenty four hours because of the need for Candace to get back to Courtney. So thirteen minutes after midnight on September 26th I drove them home. Courtney being just seventeen months old wasn’t thrilled about sharing the lime light with this new baby and rolled her eyes at the sight of her! We had to wait several weeks before the genetic DNA test came back to see if Kendall would have the same deadly disease as her older sister. Finally I got the call and we were so happy! Kendall is not even a carrier of the gene. She is such a good baby. She has dark hair; she isn’t as fair skinned as Courtney. She looks like Candace and my son Brandon.
In November Courtney was in the hospital again but got to go home on Thanksgiving Day. In the month of December I rushed around trying to get things ready for Christmas. I was so afraid that she would get sick again and have to spend Christmas in the hospital. I wanted them all to have as close to a normal holiday as possible. Candace and I hung a white sheet over the sliding glass doors and a few decorations and put the rocking chair in front of the tree. My son- in- law, Darrick dressed up as Santa. My oldest daughter Shirley and her husband Darrick often come over on Saturday mornings to spend time with the girls. Aunt Shirley brings new books and reads to Courtney. I had matching Santa dresses for each of my granddaughters to wear. We put the girls one at a time on Santa’s lap and I took pictures.
We handle Courtney ever so delicately because she has scoliosis and both her hips are dislocated. I wish we could have professional pictures of the girls but I think they looked nice.
Courtney’s godmother Melissa brought her friends from her high school choir and they performed their Christmas program routine for Courtney while she lay in her hospital bed. Courtney was so amazed to see this singing and dancing in person she had only seen things like this on TV.
On Christmas Eve a rare event happened for us in the Houston area, it snowed. Candace had brought in some snow and let Courtney touch it. I told her that God must have sent the snow just for Courtney so her Christmas would be even more special. On Christmas morning Candace let the girls open their gifts from Santa and they had such a nice day. The very next day Courtney had to be rushed to the ER again.
We thought this was it; we are going to lose her today. Courtney couldn’t focus her eyes to see us and she wasn’t breathing. The doctors didn’t know what was wrong this time. They ordered an MRI, CAT scan and blood work. Courtney was having seizures! This is not anything associated with SMA. The doctors finally diagnosed the problem as Acute Disseminated Encephalomyelitis. This is a rare occurrence where a virus for some reason attacks the myelin in the brain. They told us it could take a very long time or maybe never to recover from the seizures. The doctors ordered anti seizure medicine and put Courtney on steroids. The steroids would be bad for the SMA but we were told they had never heard of another patient with SMA having ADEM. We were afraid Courtney would lose the only little movement she had left. We prop her little hands close to her face and she can play with her pacifier. She finally got to go home from the hospital a few days after the New Year. She can’t move her fingers as well but other than that our courageous Courtney pulled through once again.
In January we put Courtney’s new dress on and put pillows under her. We hung a white sheet on the wall behind her and Candace made a little bouquet with roses and put it in Courtney’s little hand. She sprinkled loose petals around her beautiful daughter’s body taking care to let her tiny toes show since she had given the precious girl a French pedicure. We took many pictures of Courtney that day but one was our favorite. It is hard to get Courtney just right because she can’t move or hold her head up. We tried to make her look as natural as possible. My son Brandon and I tried to edit the picture on my computer but Candace had to do the final editing to take out all of Courtney’s vent tubing. We really don’t know much about editing pictures but we were happy with the end result. I tend to brag a lot about how beautiful my granddaughters are, as any proud grandmother would do. Not knowing if we will have Courtney from one day to the next makes my pictures of Courtney even more special.
In March we had another scare. Courtney wasn’t responding or breathing so Candace gave Courtney her anti-seizure medicine and she called 911 around midnight. Once again we thought this was the end for our darling little girl. Candace was crying, no one was being allowed in with Candace and Courtney other than the emergency personnel. I stood by the door silently praying. As the EMT's took Courtney past me, I touched her little hand and told her I loved her. I thought this would be the last time that I would see her alive. When they got to the hospital the anti-seizure medicine was starting to work and Courtney was starting to come around again. She stayed at the hospital for a few days as tests were done and the doctors increased Courtney’s anti-seizure medication.
In April my family had a little party for Courtney on Saturday morning the 9th. My son-in-law Darrick reassured me that the DVD I had asked him to make would be ready for Courtney’s real birthday on Wednesday. I wanted to give something special to Candace and Courtney so I had chosen fifty of my favorite pictures of Courtney beginning with her ultrasound picture and going up to her second birthday to go on the DVD. Jennifer our nurse had suggested the song for the background music. On Courtney’s birthday we put the DVD on for Candace to watch. Everyone gathered around the television and the first sound we hear is a baby’s heart beat in utero. The first picture you see is the black and white ultrasound picture of Courtney then the song “In my daughter’s eyes” sung by Martina McBride starts and all the pictures of Candace and Courtney beautifully appeared one after the other, ending with a picture of Courtney sleeping. Candace cried as did most everyone who watched. Darrick had done such a wonderful job of making the DVD. I was so proud to be able to give it to Candace and Courtney. Courtney is our miracle; she made it to celebrate her second birthday!
I wish I had a fairy tale ending for my story about Courtney; like a cure for SMA.
Each day that goes by that we still have our precious little girl is a miracle. It is an honor and a privilege beyond comparison to anything I will ever know to be “Courtney’s Grandma.”