The Collin Dieter Gerstlauer Foundation for Metabolic Disorders

Collin's Story

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Collin's Story

Collin Dieter was born on April 14, 2008, a Monday afternoon at 1:37 pm via emergency c-section 13 weeks early. Over the weekend his mom had been feeling ill, swollen and tired.  She assumed it was just pregnancy symptoms. That Monday morning she went in for her monthly check-up and was promptly admitted into labor and delivery around 10:00am with signs of preeclampsia. In addition, Collin’s mom had developed a condition called HELLP syndrome. Both Collin and his mom were in danger and the only cure for this type of pregnancy syndrome is to deliver the baby as soon as possible.  Collin came into the world crying… weighing in at 2lbs 2oz and 14 ½ inches long. He was so precious and so small... the neonatal nurses in NICU said he was a “wild man” and quite feisty! Collin was mature enough to survive, although we knew he would need a prolonged period of intensive care.

Collin celebrated a mini milestone at 1 week. He started tube feedings through a nasal tube. Up until then, he had been fed a blood protein mixture through an IV. His little lungs were working hard at breathing and the doctors had hoped to remove his ventilator within another week or so. With his body temp being really stable over the past week, his fabulous nursing staff opened his "space cube" and his Mom was finally blessed with her first kiss! What an amazing feat for week 1.

As they say in NICU, premature births are a roller coaster of ups and downs, and lots of crazy loops! Everyday there were tiny steps forward and sometimes big steps back... The next week seemed to be starting out with some big steps back but Collin kept fighting his way through. On Monday, the doctors began to see a decrease of oxygen in Collin's blood gases, increased heart rate, less independent breathing, and increased blood pressure. His blood tests showed no extremely abnormal signs of infection, but by Tuesday things appeared to be getting worse. His color was not pink and healthy looking as it had been, but instead yellowish and blotchy. His stomach was slightly swollen and his little tummy was not digesting the milk. X-rays showed an increase in fluid retention in the lungs. His doctors stopped his feedings, placed him back on IV fluids as his source of caloric intake and began an antibiotic immediately until they figured out what was going on in his little body. Early Wednesday morning, x-rays showed that his bowels had developed a very common, but very serious preemie condition called NEC (Necrotizing Enter Colitis), a gastrointestinal disease that involves infection and inflammation and causes the destruction of the bowel or parts of the bowel. In some cases the bowel perforates and a surgery is done to remove or repair the tear and also remove any damaged portions of the intestine.

We were called to the hospital at 6:30 that morning to prepare for his transfer to Children's Hospital of Orange County (CHOC) where the doctors would perform surgery to examine the bowels and see what damage had been caused. He was transported by ambulance. Surgery on a baby of his age and size is very risky and in cases such as these, they don't know much about what they will find until they get inside. He was transferred at 10:30 am and surgery began around 1:30pm...

Collin came through surgery very well. His doctors removed a small portion of the area that connects the small and large intestine and were fairly confident that they got all the damaged and infected areas.

Following the surgery on Wednesday, we were unprepared for the amount of set backs that we were to face in the days ahead. Because of the tear in his intestines, a large amount of toxins had been released into Collin’s tiny system.  This started a series of other problems and concerns. An infection of this size in a small body can upset just about everything.

There were concerns about his heart rate being too high and his blood pressure being too low, as this causes diminished blood supply to what the body considers his "less important" organs. His kidney function was the first to go. Collin’s tiny body began filling up with fluids and he was not producing urine at all. He had gained over a pound of excess fluid and his soft baby skin was just stretched to the maximum (even his ears were swollen). The infection, combined with the high number of blood transfusions he had received, lead to an increased level of potassium in his blood which gave his body a frightening purple-grey color.

His doctors ran a number of heart ultra sounds and brain scans to ensure that blood supply to those vital areas was still strong and not causing any additional concerns. He was on a series of medications ranging from dopamine to control blood pressure, insulin to help with the high level of potassium in his blood, glucose to monitor the sugar level, calcium to replace what was lacking, pain medications and more blood platelets and plasma needed control the bleeding of a small hematoma on his liver (a result of an invasive surgery on such a tiny body). His ventilator was set at maximum settings and his blood was tested every hour to monitor the amount of oxygen and carbon dioxide saturations, which seemed to be fluctuating rapidly.

Amazingly, after a week of ups and mostly downs, we were able to say that Collin was recovering from the perforated bowel surgery and the results of having such a large infection in his teeny-tiny system. We were not out of the woods, but we seemed to be finally on the right path. All of his vitals were returning to normal and he began to shed some of the excess fluid he had been retaining. His heart rate, blood pressure and temperature remained stable and he was taken off of a number of medications. His nose, toes, and fingers started to return to a sweet baby pink color.

The following week was filled with some tiny steps forward, some large steps back, some tiny steps back and some larger steps forward. We really did not seem to be getting anywhere very fast. Thursday afternoon, we met with a team of Collin's doctors: a neonatalogist, a metabolic specialist, and members of his nursing staff to discuss his progress and status. His doctor explained to us that, while the severity of Collin's situation was still very serious, he was extremely hopeful and doing everything possible to support Collin in growing and getting stronger everyday. He was concerned that Collin was still on such high ventilator settings and he decided to start a steroid treatment to strengthen his lungs and help him breathe more successfully on his own. It had been such a long week; on this medication, off this one, on this other new one…all to try and control his blood pressure, heart rate and fluid retention. He was still very swollen and discolored from the infections. They told us that it could take several weeks for all of this to be resolved. The positives were that his heart was still proving to be very strong and his neurological scans were showing healthy brain development. They also wanted to see more weight gain in the next couple weeks.

This was the point in which the metabolic specialist came in to our lives.  Collin was diagnosed with a rare disorder called LCHAD, in which his body is unable to breakdown long chain fatty acids to produce energy. What we were told, had read about and understood at this point, was that it is managed by a life-long diet plan and dietary supplements. When diagnosed early (at birth or very soon after), a child has an EXCELLENT prognosis and can live a long healthy normal life. It is when the deficiency goes undiagnosed that a buildup of fatty acids can cause a number of very scary problems in the brain, heart, liver, and eyes.

At this point, Collin was still being given IV fluids with caloric value and the metabolic specialist started a medium chain fatty oil to help Collin process the fats he was being given and also to assist him in gaining some weight. The metabolic specialist would be working very closely with Collin's doctor, a nutritionist, and us for a VERY long time. The doctors followed up with a DNA sequencing blood test to be absolutely certain he had LCHAD.

Sadly, over the next few days Collin was not doing so well. He was still very sick from the NEC and surgery, and after his latest metabolic screening we had learned that his LCHAD deficiency was getting significantly worse. He had so much to fight against and was just not getting any better. He was still on maximum oxygen support. The oscillator was set so high that he started to have cardiac spells. Chest compressions and hand held oxygen was needed to get him breathing again.

We met with his doctor and metabolic specialist again and they were concerned that he would not get better from all of this. They were worried that even if he could recover, even if his lungs could get stronger, even if his little heart held out, that the damage done and the severity of his LCHAD made for a very poor long term prognosis.

It was at this point in Collin’s short life and ours that we did not know what to do. We felt that there was very little hope and that we were being selfish for putting him through all of this. But at the same time we could not give up on him. What we needed and wanted was a miracle. We needed prayers and hope and we needed to stay strong.

On Sunday, May 18^th 2008, after 5 weeks of ups and downs, highs and lows, we were able to hold our angel for the first and last time. We cried as we said good-bye to our son, a beautiful baby we hardly got the chance to know. We kissed him and told him how much he was and always would be loved, and how we watched as he fought everyday to stay with us. No more pain, no more hurting, no more fighting for every breath to live. He was such a little fighter and on Sunday, May 18^th, 2008, he won his wings. On that day there was one more little angel in heaven… our angel, Collin Dieter.

Lay me down to sleep
Let your open arms hold me as I cry
My healing heart’s at peace
Just hold me tight and lay me down to sleep

For sometime now I’ve tried to fight this fight
Holding on to you with all my loving might
But you never left me
I could see you standing by my side
Waiting for me to rest

Lay me down to sleep
Let your open arms hold me as I cry
My healing heart’s at peace
Just hold me tight and lay me down to sleep

You waited for me each and every day
Wanting so much to help me along the way
Sometimes things that happen
are just out of our control
It’s okay just to cry

Lay me down to sleep
Let your open arms hold me as I cry
My healing heart’s at peace
Just hold me tight and lay me down to sleep

“Lay Me Down to Sleep”
song by Robin Patrick