The pregnancy had been going really well - not a lot of morning sickness and none of the symptoms the doctors tell you are abnormal. All of the doctor's visits had been routine and normal until the visit around 34 weeks. Kathleen was measuring a little smaller than normal...about a week and a half behind schedule. The doctor recommended having a level 2 sonogram to ensure that the baby was doing well.
We waited for almost two hours before going back to the exam room for the sonogram. Once the doctor began, everything seemed normal - you could see him squirming his arms and legs around and his heart was beating. Kathleen asked if everything was ok and the doctor was quick to say he needed to look at everything before he gave his review.
We will never forget the next words that came out of the doctor's mouth - "your son has a dandy walker brain malformation and he may have a heart problem...the left side seems to be smaller that the right." Kathleen immediately started crying; she had seen children in the ER with Dandy Walker and she knew that if the heart defect could make things even worse.
We were both a wreck. It seemed like our lives had just been turned upside down. To make matters worse, the doctor didn't explain the situation really well, only referring to a medical book and showing us a few images of a Dandy Walker brain and referring us to meet with a cardiologist for testing of the baby's heart.
About one week later we met with the cardiologist. After a fetal echocardiogram, the doctor told us that Colin didn't have a left hypoplastic heart, rather what appeared to be an extra vessel coming down to the heart. Nothing too serious, just something we would need to look at more closely after Colin was born. Worst case scenario, Colin would need to have a simple surgery when he was around one or two years old. Finally, some good news.
The next fours weeks following the level 2 sonogram was rough. We were told that there wasn't much we could do aside to be positive and pray that his Dandy Walker malformation wasn't one of the more severe cases. From what we could gather from the doctors and the Internet, Dandy Walker syndrome ranged from very mild cases where the person didn't even know they had the condition to very severe; numerous issues all related neurologic in nature. It was difficult for Kathleen to not think about all of the possibilities and their repercussions of the potential diagnosis Colin could have, it was what she was, a pediatric emergency room nurse. I tried to remain positive about everything, though it was very hard, we both knew things were out of our hands, and regardless of what happened, nothing was going to change how much we would love and care for Colin.
Colin was born about two weeks early on November 20, 2007 at Overland Park Regional Hospital. We knew that due to needing a caesarian section for Liam, we decided Kathleen would have another caesarian section. It was a very emotional morning for everyone. Obviously, Kathleen and I were really nervous about the surgery and about Colin's health. Everything went fine with the caesarian surgery, but things did not go well with Colin. Unlike most newborn babies, Colin didn't cry immediately. He looked like he wanted to cry, but rather than crying he made a high pitched coughing noise. Because he was having difficulty breathing the doctors needed to use oxygen to help him take the first few breaths. The doctors would continue using oxygen to help him breathe until he was taking upstairs to the Neonatal Intensive Care Unit (NICU).
The breathing issues continued once he was in the NICU. The doctors first tried an oxygen 'blow by', where an oxygen mask was placed in front of Colin's mouth. Next was an oxygen 'tent' placed over Colin's head. Both of these didn't give the results the doctors were anticipating. The next step was CPAP, which involves tubes placed in the nostrils, delivering pressurized air into the system. Needless to say, Colin did not really care for the CPAP. Lastly, the doctor decided to intubate, inserting a breathing tube down Colin's airway. The doctor didn't want me to be there for this procedure. It was tough to leave him, especially since I had been near him since the moment he was born. I didn't quite understand at first, but later I was told that sometimes this procedure can be difficult and take a few attempts to get it right...something I probably wouldn't want to witness. Ultimately, the intubation worked and Colin was breathing "normally" with the help of the ventilator.
In addition to the breathing issues, Colin was also born with other abnormalities. He had a few slightly different body features - his ears were slightly lowered than normal, his eyes were slightly slanted downward at the outside corners, his nipples were spaced a little farther apart than normal, and the shape of his head was a little larger than normal. All of these were very slight, it wasn't until the doctor pointed them out that we really noticed them. He also had some deformities in his finger and toes - his index fingers were missing fingernails, his thumbs were slightly wider with smaller nails, and his two little toes were missing nails. The neonatalogist didn't know the significance of the finger and toe abnormalities, but she thought the other physical features might be symptomatic of several different syndromes. Though the doctors didn't really tell us which syndrome it could be, eventually we were told it would be probably DOOR Syndrome.
Kathleen and I stayed at the hospital every day. Colin had yet to opened his eyes, but we both could tell that he knew we were there...he would hold our fingers tightly and seemed to be able to recognize our scent. We were able to hold him, although not as much as with a normal baby. Due to the IV lines, breathing tube, monitor sensors, and his delicate conditions, the doctor and nurses would usually only let him be held once a day. We cherished every minute we were able to spend with him.
Colin remained in the NICU for the next four days while Kathleen was recovering from surgery. In those fours days Colin had an MRI, an echocardiogram, and what seemed like, hourly, blood tests. The MRI results were just as we thought - the Dandy Walker condition was there but did not really tell us the severity of the malformation; that he was missing half of his cerebellum, had an absence of the corpus collisum and migrational issues... not really the news we were wanting to hear, but at least now we knew what we were up against. We did get good news about his heart - his heart was in better shape than we last heard from the cardiologist. Colin had a couple of slight heart murmurs which the doctors said may simply resolve themselves, or they could be corrected with certain drugs, or a simple surgery later. The important thing was that his heart was functioning well.
On Friday, Colin was finally transported to Children's Mercy for further testing and care. In some strange way I know it brought Kathleen comfort knowing he would be cared for by her second home. He was transported to Children's Mercy by one of their transport teams. After arriving at Children's Mercy, Colin was surrounded by what seemed to be an army of doctors and nurses...all working to get Colin settled in to his room in the NICU. The goal for the rest of the weekend would be to keep Colin stable and comfortable until Monday, when he would then be able to undergo test to determine the severity of his problems.
The next few days were really hectic for Colin. We met with an Ear Nose & Throat specialist. Colin's airway was scoped. He had multiple chest x-rays. We met with the Genetics doctor and counselors. We met with the Neurologist. And there were the vision and hearing tests. Through all of this we found out some good and bad news. We found out that there wasn't anything obstructing his airway...maybe some hope that he would be able to get off of the ventilator and breathe on his own. This was great news. However, we were also told that Colin was blind in one eye and most likely blind in the other eye. And that he also had hearing loss in his outer and middle ear...although we were told there was a special type of hearing aid which would most likely help him to hear. The new wave of bad news really got us down...it was like little Colin just couldn't get a break. It was as if nothing was going our way. We tried to keep our spirits up, hoping that the good news about Colin's clear airway would lead to more good news.
After receiving the good news from the ENT specialist, Colin's doctor recommended removing Colin's breathing tube and see how he did breathing on us own. Everything seemed to be hinting that it would be a success...no obstructions in his airway, he was slightly older and stronger, and he had been breathing over the ventilator. We were really nervous about having the breathing tube removed, but we knew that it was the next step we needed to happen. The doctors removed the breathing tube the next morning. It was strange for us to be able to finally hear Colin...still no cry, but initially he seemed to be doing o.k. He kept making an unusual coughing noise, almost as if he wanted to cry. The doctors told us that this was sometimes normal for newborns who had just had breathing tubes removed. It was the longest 27 hours of our lives. Kathleen did not leave his side, instinctively knowing the eventual outcome; respiratory failure. They reintubated him after watching his lab values and clinical appearance falter. A couple days later he became ill. The medical world called it 'sepsis'. He looked, felt and smelt ill. They started to treat the illness aggressively with additional labs, x-rays, and medications. In the midst of his illness, the doctors wanted to attempt to extubate him. We refused. We wanted him to be at his optimal health before trying again, and besides, we needed more answers about his overall health... all of his bodily systems.
They agreed, and asked us to let them know when we were ready. Looking back they knew what we were not ready to accept. The next week and half we worked on finding out more about what Colin could and could not do. For us, the two final factors in knowing what he wanted were simple: the studies of his stomach and intestines let us know that his body did not allow for digestion and the night before we lost him, he extubated himself showing us how little he would be able to effectively breath on his own. Luckily, the fellow (doctor in final training) came in and reintubated him without hesitation letting us know this was not the right time for him.
The following morning, all of the family members that were able to tell him goodbye came to the hospital. Everyone shared a few last precious moments with him and we walked him to what Kathleen calls the 'death room'. The staff gave him two medications to make him comfortable and then removed the breathing tube. And one day, when we feel stronger, we will tell you about the three and half hours that followed. For now, no one should have to experience watching their child die. Colin died at approximately 2:30pm on Dec 14th, 2007. He gave us three and half weeks of life and we cherish every single second of it.
Colin's visitation was the following Monday, his mass was that Tuesday and his was cremated Wednesday. We were able to bring him home December 27th 2007, were he remains. For us, that was the only option...close to us, in his home. It is where he belongs, with his family who loves him so deeply.