Pulse, Cole Robert

Hello. I am Karli, mother to Austin, 3 years and Cole forever 8 hours old. I wish I would have found CHERUBS sooner. Where do I begin?

When we found out for sure that we were expecting our first child we were ecstatic! It took us almost 2 years. My entire pregnancy was nearly perfect. I had no morning sickness, no odd cravings. My water broke almost3 weeks early, but he was perfect at 6.10oz and 19 in long.

When we found out we were expecting again, we were overjoyed. Everything was perfect again. Or so we thought. I had my first ultrasound at 9 weeks to check dates. Everything was fine, we were told. I continued with my monthly check-ups until I was 19 weeks.

We went in for the ”routine” 20-week ultrasound. We did not think anything of the techs speaking in “code” They did everything not to alarm us. When I think back I can still see the pale, blank looks they had. When I asked if anything was wrong, they just passed it off as being hard to see everything because he was still so small. We went home thinking things were great.

I was not scheduled to see the doctor for 3 more weeks. In that time we did not get a call from the nurse confirming that things were OK like we did with Austin. I thought they must only do that when it is your first baby. Boy was I wrong!

When I went in, I asked my nurse why she had not called. She then told me that the etches had sent my results to the wrong doctor and my doctor has just received the report 2 days prior. She also said there were something’s the doctor wanted to discuss with me. My mind was racing, could it be twins.....or was my due date way off?.... The time waiting for the doctor seemed like hours. She came in and explained things to me. I was blown out of the water! Like so many others I had never even heard of a diaphragmatic hernia. She also said they were not able to see all the parts of the brain or heart. I was sick. How was I going to tell my husband? This doesn’t happen to us, our baby had to be healthy. She must be wrong. I was refereed to a perinatologist for a level 2 ultrasound. We could not get in until Monday,(this all happened on Friday afternoon). I explained everything to my husband. We were both just in shock. We spent the weekend praying, reading and wondering. On Monday our nightmare was confirmed. CDH. There was a bright side though. He said the heart and brain looked normal. We had an amnio done to rule out the long list of other defects that go along with CDH (this later came back fine, no other defects). The doctor explained our options: abortion-out of the question, not even an option for us, fetal surgery-we felt this was still to experimental at this time, or carry the baby as close to term as possible and do the surgery after he was born. After many days of praying, more reading and meeting with more doctors, we chose to do the surgery after he was born. We felt that would be our best chance. We even chose to deliver in Minneapolis, 300 miles from our home in South Dakota. We met with all the doctors and nurses, made more trips up to Minneapolis and we thought we had everything in order. I even moved up there my last 2 1/2 weeks. I stayed (alone, Scot stayed home to work) at an accommodation center which had a bed and TV and that was about it. Scot would come up on the weekend and stay for my Monday DR appt. I had bi-weekly non-stress tests and biophys profile. Cole passed every test with flying colors. We thought we had this beat!

On Christmas Eve my mother-in-law brought Austin up to see us. It turned out that he had come down with a double ear infection.. So off to the ER in St. Paul, where we were staying with my brother-in-law. To top everything, I started to have contractions. I did not get too alarmed because they were still tolerable. By the time we were discharged from the ER and had the prescription filled I could hardly walk, it felt like my lower pelvic area was going to fall out! I told Scot we needed to go to the hospital NOW! I had nothing along. We tried to call my mother-in-law on the way but we could not reach her.

When we arrived at Abbot NW, I was already at an 8, and I had to push. With the holiday, and Minnesota weather I was just hoping that my doctor was on her way.

I was wheeled into the surgery area. Scot and my ill little Austin were not able to come in so they continued to try to reach my mother-in-law. They did. She came to get Austin. Mean while, they broke my water and I quit having productive contractions. The team from Minneapolis Children’s were all there and ready. They went back. I continued to labor until 3 am when I could start to push. The team came back and at 3:19 am on Christmas morning Cole Robert was born. He was beautiful! The team started working on him right away. They put every kind of tube imaginable in him. Before they took him away, I was able to see him and touch him. The doctor told me there was an unforeseen problem; Cole was born without a sternum. His heart was laying just under the skin. I thought, “how could they not see that- they did every test under the sun?” After I was cleaned up my nurse brought me to see Cole. He was on hi freq ventilation, had a chest tube and every other kind of tube in him. He was on medications to keep him from moving. He laid there so helpless and here I am not able to do anything for him. As a mother that was so hard, there was nothing I could do but pray. The nurses told us that he was stable for now and that we should go back and get some rest, by this time it is about 5:30 am. We went back to rest. We did have the camera on him hooked up to the TV in my room so we could keep an eye on him. At 7:30 am we got a call from the NICU saying we need to come right over! The doctor told us Cole is not doing well on the high freq vent and we need to think about ECMO. We wanted to go through with it. They needed to do some ultrasounds of him first. In the mean time we were able to hold and spend time with Cole. While they were getting a scan of his head the doctor came in and said his blood gases’ were very low and that there was a pocket of air in his chest they could not control with the chest tube. He also said there was no way to tell how much damage had been done to his brain with the low oxygen levels he was getting. They just could not keep the levels up. He also told us that what ever we do from here on out we would be doing things TO him and not FOR him. Neither Scot nor I wanted that. We needed to make the hardest choice of our lives’. We made the choice to take him off life support. But first we had Cole baptized. We then were able to go into a private room to spend time with Cole until he passed on. Cole was so strong, he just did not have enough lung tissue.....Cole died in my arms at 11:40am on Christmas day. This was the worst day of my life. We left for home the next day, without my baby. I felt so empty inside, it hurt so bad. He was buried on the 29th in my husband’s hometown.

Not a day goes by that I don’t think of and miss him. We never got to hear him cry or see him open his eyes. BABY COLE WE MISS YOU!!!!

I am Karli, mother of two beautiful boys, Austin is 3yrs and Cole is 8 hours old. Thank you for listening.


Written by Cole's mom, Karli Pulse (California)
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