His life here was too short
but his love will be with us forever
until that glorious day, we can
once again hold him in our arms
 

Angel Chase’s story

May 8-11, 1991

This letter is to inform you of the three days with our son Chase Jordan Milsner, C.J.

Chase was born on MAY 8 1991 and died on MAY 11 1991. He died of a neurological defect called hydranencephaly (hyd-ran-in-sef-ely). We had three days with C.J before we had to give him up. Chase was delivered only 4 ½ weeks before his due date but his brain had not developed since the first trimester and his lungs were not developed enough for his brain to control them. Lauri and I feel lucky we had the time to spend with C.J. but miss him just as if we had years to be together. I hope this can help any of you who have gone through this or watched others in this time of grief.

These are the events leading up to Chase's Death MAY 11 1991

When C.J. was two months from his due date of June 9, Lauri's doctors found he had an abnormal growth under the right side of his skull. They also saw a dark spot inside, which looked like fluid, but could still be solid and only after delivery could this be confirmed. This was diagnosed as unilateral hydrocephalus (water on the brain) and is caused by the brain tissue not absorbing the spinal fluid as it is being continually produced. This was the diagnosis until delivery.

It was determined by the Neurological specialist to have a Cesarean Section (C Section) 4 ½ weeks early in Sacramento where these specialists are located. In the operating room were two of Lauri's doctors and one of Chase's, along with all the nurses that can fit in one operating room.. Chase did not breathe at delivery, so his doctor began pumping Oxygen into his airway by hand. This was the doctors clue that something else had gone wrong. His heart was strong and steady but the eyes were not reacting to stimulation from light. In fact, his only reactions were from pain stimulation, which are sensed in the spinal cord. Any one of these symptoms could mean significant problems, so C.J. was rushed to the Neonatal Intensive Care Unit, NICU, where he could be placed on a respirator and monitors for his lungs and heart. It was ten minutes before C.J. could make his lungs work and even that was inconsistent and not rhythmic, so the respirator was left in place for the rest of his life.

Chase Jordan Milsner 6 lbs 4 oz, 19 ½ inches long. C.J.'s head was a little larger than 'normal' but that was the only visible effect. It was real scary for us until the "CT" scan, X-RAY, of Chase's head was done because nobody knew why C.J. had no real responses to stimulation. C.J.'s only actions seemed to be random and jerky. All we knew was there was a possibility of brain damage, or limitations in his learning potential. Nobody even guessed the outcome would be hydranencephaly, no brain tissue development under the skull. That's why C.J.'s head was larger than normal, the spinal fluid should get absorbed by brain tissue that was non existent. Therefore, all the fluid filled the empty space.

The delivery was Wednesday and the CT scan on Thursday. Friday was for my folks, my brother and both our sisters' families to touch, talk, watch and Love Chase. The hospital chaplain did a blessing over C.J. and the family joined in for a very touching ceremony. Saturday was the day for Jacob, Lauri and I to be alone with Chase. This was our way of telling Jacob of his brothers present and future situation. How to tell a two-year-old of this was not easy. Early Saturday morning the NICU nurse watched as C.J.'s vital signs slipped. She noticed his heart rate slow down and the way his lungs processed oxygen became less efficient. When we came in Saturday morning, we even noticed his weight had been dropping since birth, which led us to our conclusion that 'time' was working against us. We had to make another quick decision. We had to figure out the reason that Chase was on the respirator. Was this to allow his body time to heal, or to make our life easier. Our choice was to not 'force' him to stay here much longer. That afternoon, after my brother took Jacob, we made the choice to remove the respirator from C.J. If Chase wanted to go on living... we would have been there for feeding, loving and whatever he required. If Chase wanted to go... we would be there to set him free. This was our choice of how we want to die when our time comes. He died at 2:15 pm Saturday May 11. The doctors asked if we wanted to stay at the hospital that night, but we had wanted to stay with Lauri's sister and family.

This case of Hydranencephaly was probably caused by a problem in the blood vessels that stopped the blood from getting to the developing brain tissue. This accident happened very early in the pregnancy, approximately the first Trimester but with no answer as to why. If any of the doctor's staff could have seen into the future as to this outcome, we would not have had these three days with C.J. The operation would not have taken place therefore the delivery would have been later and harder on Mom and C.J. Lauri's doctor said C.J. would probably not have survived a normal delivery. There had been many separate times at different hospitals that Hydranencephaly could have been found before delivery. With the use of ultrasounds, this could detect the brain tissue not developing normally and these were done almost biweekly since the third trimester. It was to our benefit that the 1991 technology had hid the real problem with Chase from us. We have been very busy since we found that Chase had a problem.

These events have been eased by Lauri's and my faith in God and knowing that C.J. is in Grandma's waiting arms.

Chase & Jacob now have a sister who's name is Sheri.

 

The beautiful painting is the work of
Anne Geddes.

 

 

 

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This website is funded in loving memory of Jason S. by his mother Kammy

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