All children have their own unique medical and developmental needs. Some special children have exceptionally serious conditions which require an intensive level of treatment and nursing care in order for them to return to a "normal" or less restrictive environment. For these children, a traditional, acute care setting is not the answer. That's why CRC’s Pediatric Program was developed. CRC has had the privilege and honor of being a part of the lives of many children who need these services. Here are some stories which illustrate the developmental, spiritual, and physical journey of several children, including their families, who have been/are at CRC, and how the staff and programs at CRC have impacted their lives…
If you have personal stories like these that you'd like to share with families and friends, you can visit two excellent social networks called Support Circles or Caring Bridges. Both sites offer excellent tools to help provide updates about your loved one's progress.
Faith Cerresa Coleman was born on July 6, 2000. She was admitted to Children’s Hospital Oakland when she was two weeks old with a sore throat and low oxygen levels. Within a month, she was given a tracheostomy to aid in breathing. Shortly after, she was given a gastrostomy tube (g-tube) to aid in feeding. Just out of surgery for the g-tube, Faith did a quick sit up (her first), however, this was actually an infantile seizure that causes retardation in 75% of cases.
After what seemed like an eternity, her diagnoses was given – she had neurofibromatosis, a genetic inheritance or a mutated gene that causes tumors to grow on the end of nerves. While little is understood, it seems to grow when the baby grows. Most often in slowly grows in adults who are 40-60 years of age, but in infants, it grows rapidly as their growth becomes faster.
Certainly when we found the areas affected in Faith’s case, it gave us cause for concern. It is on her brain stem, in the cracks of her heart, liver, stomach, and throat (which is why she needs the g-tube and tracheostomy). X-Rays confirmed that the neurofibroma was occluding her airway in one lung. We could see one eye bulging out from a tumor which affected the hearing of one ear. With all the complications, orders of “Do Not Resuscitate” (DNR) were asked of the family. Although the family didn’t feel they would need them, we signed the order based on her quality of life and complications just reoccurring in days. When Faith was born you could see and sense from her condition it may only be a matter of time. But from the day we received the doctor’s report on her long term condition, I felt God come over me to tell me your child will die on His appointed time, not the doctor’s time table. At least two times the doctors asked us to call the family in to say our goodbyes and I made prearrangements for funeral plans with my pastor-friend only to see God’s miracles of faith bounce back like nothing happened.
During her first year, Faith beat the odds for survival – her infantile seizures, coughing so hard that she would pass out on occasion, and assistance just to breathe – and through all of this, she had a charm and smile that won your heart over. For us, our Faith has been foremost in how we accepted what we were going through. As an example, a side effect is osteoporosis, a thinning of the bones. During Faith’s care, her arm and collar bone were broken. Most people might get mad or sue, but for us, we saw Faith, after a week, remove her arm from the cast and wave it around like nothing happened. We saw and felt that it was just another sign of God’s miracles working in her life.
Being told for years that your child has only six months to live and show all the outward, negative signs, and have her bounce back, only made us stronger in our faith and the miracle power of prayer was working in her life. Over time, we started calling ourselves a “Faith times two” family. We have a child named Faith, but an even greater appreciation of the miracle of healing through faith and answered prayer. When my own faith was weak, God worked through my own child’s million dollar smile – an ability to be happy in spite of it all. Joy of life from such a little one is only because of God working in her life.
When it came time to transfer Faith to a long term care facility, we felt uncertain because it was so far away. We visited the CRC and felt a family-like atmosphere (as opposed to a traditional hospital one we were used to). We saw the quality of life any parent would want for their child: a community which brought Santa, a costume parade at Halloween, animals of all sorts (goats, ponies, a cow and calf, and snakes), birthday parties, playtime outside, a small swimming pool, and the list goes on. One nurse even takes Faith to Brownie Scout meetings on her own time! I not only see my child growing, but I see the care of a parent through her care at CRC, pour into her when I can’t be there. I am so grateful to all who care and pour into our “Faith Times Two” family.
A year and a half ago (2006), for no reason, Faith would stop breathing, several times just making it back. We witnessed one episode and prayed to God if it was her time, then she could go, but He heard our prayers and she did what we had seen so many times – she bounced back even stronger, doing so well that that year, the DNR orders were removed. Faith also improved in her spirit and love of learning, seeing what life has to offer. She is learning from the teachers that come in, plays games on her computer, and gets around in a wheelchair (all by herself). Just recently, Faith has learned how to speak and constantly improves. More has happened in just the last little while, with improvements in her quality of life, for us to be overjoyed. We are grateful to be a “Faith Times Two” family.
- Papa Roy
I have a beautiful little girl. She is now two years old and her name is Adriana. She was born full term at St. Rose Hospital in Hayward, CA. She showed breathing problems right away.
I wasn’t even able to hold her. After a few hours she was sent to Oakland Children’s Hospital. There she was intabated and hooked up to a ventilator. They ran tests for a month and a half but couldn’t figure out a diagnosis. That is when they sent her Lucile Packard Children’s Hospital (LPCH) for a second opinion. After her being there for almost another month and a half she was finally diagnosed with Congenital Central Hypoventalation Syndrome (CCHS) that is incurable . The main side affect from CCHS is that her brain doesn’t tell her to breath when she falls asleep so she needs to be ventilated when she is sleeping. A day or two after her diagnosis she had her trach and G-Tube put in. Within two weeks after that she was residing at CRC. There is where she started to become stronger. She went from being ventilated 24/7 to only being on when she was sleeping. The people at CRC treated Adriana like she was family. After her being there for a while we found out that we could start training so we could take her home. I think we received the best training from the people that work at CRC. We finished training but had to wait for home nursing to get into place. She spent her 1st Birthday there at CRC and soon after she was home. I am happy to say because of the staff at CRC and the wonderful people that are working with her now she is still home and it has been a year now. She still has her trach but will be getting her G-tube removed very soon.
Trinity was born with a severe heart defect called Hypo-plastic Left Heart Syndrome (HLHS). This heart defect is fatal if it is not corrected by a 3-stage surgery process or a heart transplant. We chose the 3-stage surgery in hopes for Trinity to survive.
At 36 hours old, Trinity was wheeled into the O.R. for her 1st heart surgery. Right before surgery, we found out from Trinity's Surgeon, Dr. Frank Hanley, that Trinity's small birth size changed her previously better odds of 80% chance to a 20% chance of survival.
At 1 week old, Trinity went into cardiac arrest. Dr. Pirooz and Dr. Dave Pettigrew massaged her heart for close to 4 hours before she was put on the ECMO bypass machine (which lived for her for 5 days). Miraculously she made it through all of that alive.
After 3 open heart surgeries, 3 Cardiac Arrests, numerous infections, numerous lung collapse episodes, 8 bronchoscapey's, 3 cardiac catheterizations, 72 hour kidney failure, 3 failed efforts of getting her off the ventilator, tracheostomy surgery, gastric-tube surgery, and 7 long emotional months of hard dedicated work from the staff at the hospital, Trinity was discharged on Sept. 9, 2002 and brought home for the 1st time in her short life. After being home for about 4 months, Dec. 31, 2002 Trinity went back into the PICU at LPCH-Stanford for 2 months, fighting phenomena. She was transferred to CRC on March 4, 2003. At 19 months old, Sept. 9, 2003, Trinity's lungs were strong enough to come off the ventilator. After having a trach for 22 months, May 6, 2004 Trinity's trach was taken out. After 14 months of living at CRC, Trinity was discharged and brought home on Friday, May 14, 2004...exactly 27 months and 1 day old, and the "Healthiest" she's ever been. It is now spring 2007, and Trinity has been home ever since. What a miracle we have!
The Children’s Recovery Center played a large part in Trinity’s long recovery and care. It was there that we were thoroughly trained in the intense care that Trinity required while she had her tracheostomy and being fully ventilator dependant. This thorough training gave us the freedom (with the consent of the CRC staff) to take Trinity out for an entire day away from CRC. The staff was very knowledgeable in working with these types of children, along with training the parents that wanted the thorough training. CRC gave Trinity more of a “Normal Life” while she had to continue to live in a hospital. They provided a backyard equipped with a play ground set, park days, parties for birthday’s and holidays, play groups for the kids, schooling, speech therapy, occupational therapy, physical therapy, etc. No one wants their child to live in a hospital, but when it comes to providing your chronic ill child a safe and more home-like environment, CRC would be the place. CRC is a place for chronic ill children not only have a chance to survive, but a chance to THRIVE!
It was a long 14 months for us while Trinity lived there, but we managed to make it work and Trinity eventually became a CRC graduate! We made unforgettable friendships with many other families at CRC along with many members of the staff at CRC. We will forever be grateful for CRC and all they did to support us while we waited and waited for Trinity to recover. The payoff for all their hard work is seen everyday in Trinity’s life as she continues to grow, continues to thrive, and continues to enjoy everything there is about living a full and happy life.
- Barrett, Melinda, and Trinity Adams
(A complete and grateful family, together outside the walls of the hospital)
Jordan Paul Namauleg was born December 23, 1997 at Valley Medical Center in San Jose, CA. Jordan was born with multiple congenital anomalies, a respiratory disorder, and scoliosis. Jordan had numerous treatments, surgeries, and a tracheotomy. From the hospital, he went to The CRC so he could receive the proper treatment for his condition. From the day he was born, anyone who met Jordan could tell he was special. Although he was born with certain complications, his family and friends never treated him differently. Jordan knew that he was unique. Although Jordan was unable to speak or walk, he never let that stop him from having a fun life. He always found a way to communicate and play with his family, friends, nurses, and doctors. As a toddler, he loved to throw a ball and watch educational shows. When it came time for him to use the wheelchair to get around, he was thrilled. He rode through tight spots as if they were an obstacle course, attempting to go as fast as he could. When he started to go to school, he was ecstatic…..this was a place for more friends. His lady friends loved it when Jordan would swing the jump rope for them to play. When he would visit his family on the weekends or holidays, he played video games and joked around with everyone.
Now at age 9 (2007), many doctors visits, treatments, and surgeries later, Jordan is able to communicate through voice and walks to get to what he wants. You would think a kid looks forward to Christmas every year - Jordan looks forward to the Special Olympics. He has been in the Special Olympics 3 years in a row. At the most recent Olympics, he received three medals for 1st place and one medal for 2nd place. This is a true success story of a little boy who, in certain people’s eyes is limited to what he can and cannot do. In Jordan’s mind and heart….he knows he can do anything! Jordan is handsome, outgoing, driven, intelligent, and charming. He has a passion for a pleasurable life. With so much support from all who are around him, Jordan has taken all that in and made his life gratifying. Jordan knows that it is not what you’re born with that makes you a certain person - it’s your personality, the love you have for yourself, and what you do that makes you who you are. Anything Jordan puts his mind to, he succeeds 100%. Whatever Jordan feels he wants to be when he grows up, he will prosper. Jordan Paul Namauleg has never let anything stop him before. Here is a boy who has been through so much in his life and never lets anything get in his way.