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Andrew was born on Feb 6, 2009. Andrew came home after a 3 day stay in the Aurora BayCare NICU for transient tachypnea (he just did not transition well during birth and needed some support to breathe.) He recovered quickly. For the next 5 weeks, he was a normal baby. He has always been a laid back, happy guy. 

On March 11th, Nicholas (big brother) was diagnosed with mild pneumonia. During the night on March 13, Andrew seemed to be a little congested. The night of March 14 was much worse related to stuffiness/congestion, some spitting up and coughing.
March 15, we took Andrew to the Aurora ER for evaluation. He was diagnosed with an upper respiratory infection, since he did not display any unusual symptoms during the visit.
Monday, March 16, Andrew was sleepier and did not breastfeed as well. In the evening, he was with daddy while I put brother to bed. I got up and breastfed Andrew, he ate well. After eating he coughed hard and cried/screaming (very unusual for him). Daddy was holding him and trying to console him. Then he stopped breathing......

It all seemed unreal, was he really not breathing? Daddy called for an ambulance. Before they arrived, he had a few episodes where he stopped breathing, kind of snapped out of it with stimulation, breathing again and then screaming with some arching of his back. He cried the whole way to the St. Vincent’s ER. At the time, we did not live far from St Vincent’s, so the EMT stated we would go there. This was ~8pm Monday night.
In the ER, they monitored vitals, took blood and contacted the pediatric intensivist, Dr. Taylor. He was intubated right away and provided sedation.
We really did not understand why he needed a head CT, but they were concerned that he possibly had a seizure.

The CT results showed a massive brain bleed. Plus he tested positive for RSV. We could not understand why he had this bleed. We were told that per protocol, they would need to report this and ask us questions regarding suspected abuse. I have worked in the healthcare system since I was in college, starting at a doctor’s office and still working in a hospital as a Registered Dietitian. I trusted the healthcare system and felt that it was an appropriate measure based on the situation. I also trusted that the full work-up would be completed for my son. We are good parents and good people period. We have always spent our free time with each other and our boys. We enjoy family time and have always cherished it, never ever wishing harm on any child or adult for that matter.  Unfortunately not asking more questions and trusting, led to the following events.

During the night, a neurosurgeon from ABMC, Dr. Gardon, placed an EVD into my son’s head to drain off blood/fluid.
The drain later clogged.

During the morning, Andrew was put through a series of x-rays to cover the whole body, looking for signs of abuse, while he was bleeding and fighting for his life.

Later morning, I was told that people were there to talk to me. A City of Green Bay detective, Glenn Deviley and 2 Brown County child protective service workers, Ronette Cox and Joel Pagel. I felt ill. We had not slept since Sunday night, had not eaten (and I was not offered anything even though I was pumping), our baby was extremely critical and then we were questioned.

I was read my rights. It was just like on television and this was really happening. The detective started off with... 2 doctors say your baby has Shaken Baby Syndrome. I gasped. He said that I should not act like I did not know that. I was questioned for over an hour. He asked everything that happened from the previous days, did we have financial problems, is there any abuse in the home, every detail, etc. He said he has never been wrong in 13yrs and either my husband or I did it. He kept saying “your baby could probably die”. He even threw the Kleenex box on the table away from me when it was offered and threw it on the floor when a CPS worker offered it a second time. It was awful. I cried so much the night prior and it just continued. Like hell.
They did not question my husband as long, but the detective tried to say that I had post-partum depression. Our stories did not provide what they wanted. They wanted a confession or either one of us to accuse the other. They then spoke to us together; they would have to take the boys away from us. Andrew would be a ward of the hospital and Nicholas would go in foster care. They felt Nicholas was not safe in our care.
We had to sign the boys over. They presented it in the way that it was our fault this was happening and if we told the truth, that we could get help. But we did not cause harm to our child. We did not know why this was all happening.
My husband pleaded with CPS to allow his mother to take custody of Nicholas. She could live with us, but to never leave us alone with him. Nicholas had never been away from us and another arrangement would have been so traumatic for him. We were scheduled to be in court the next day.
By ~2-3pm, an MRI was finally ordered. The doctor came in and told us, we did not do it.... he had a brain aneurysm.  I read the report; it was a LARGE congenital aneurysm. Everyone (family drove during the night from Upper Michigan to be with us) went through so many emotions. We had a child in very critical condition, our children had already been taken away from us and there was a reason for his brain bleed. Children's Hospital in Milwaukee was contacted and transport was set up. We regained custody of our boys immediately. The social worker there offered to tear up the papers and I let her. I had no contact with her prior to that. We saw people come and go, and everyone treated us like criminals. We were also lied to; Dr. Kathuria, Andrew’s pediatrician was not contacted. She just happened to call my husband’s cell phone (to check on how my other son was doing with his pneumonia) when we were preparing for Andrew’s transport. She could not believe what had just happened. She knew us, since our other son was also a patient of hers. We were told by Dr. Taylor, he would call her and the detective stated she was. I realize detective tactics, like on television, but I did not think that was really real. He lied many times to me.

Why was the Opthamology consult not completed prior to the whole incident with the detective and CPS?  Plus the MRI/MRA was not completed earlier, but a full body x-ray was. So much time was wasted and Andrew along with the whole family endured a terrible experience. I cannot express in words how awful this was and how it affects us still today. We will never forget any of it, we can only thank those who supported Andrew and our family with their love and prayers, and this was only the beginning.

After arriving in Milwaukee, Andrew suffered another bleed/stroke. That was his 3^rd one. He was then going to surgery emergently that night instead of waiting until morning. At ~2am he had a coiling (titanium coils and glue were used to repair the vessel). At ~5am, he had another surgery, a craniotomy. The neurosurgeon cut the skull, providing the brain more room to swell due to the massive bleeding/strokes. The neurosurgeon also cleaned out some of the dead brain tissue and blood. He was unable to remove it all. Another drain was placed for blood and fluid drainage.

Andrew and the rest of the family went through a lot as he recovered. Day by day was posted on our website to update everyone. Andrew impressed doctors, nurses, therapists, etc. Family, friends and strangers were so supportive in so many ways. We have been so thankful; we thank everyone for anything they have done for us.

Andrew was in the hospital for 3 weeks.  Then he had a cranioplasty on May 11, 2010. Andrew’s skull was put back together with sutures. He cried so much and had a lot of swelling so he went home on the 4 ^th day.

We reviewed the brain scans with his neurosurgeon, he lost almost 50% of his brain (almost the whole right hemisphere, a small portion in the front was spared). His age has been a benefit and he is such a tough guy. If all of this happened in an adult, the results would be detrimental. He takes an anti-seizure medication, as he has high tendencies for seizures. He needs a lot of therapy as he reaches developmental milestones. His neurosurgeon feels he will be weak on his left side, he has lost the peripheral vision in the left eye and he will have difficulties with fine motor skills ie. learning to write.

They feel that this aneurysm was there at birth. My OBGYN, reviewed my prenatal ultrasound afterwards and there is no evidence of it at that time. It was actually a pseudoaneurysm, a vessel was not connected and the brain was protecting it for 5 weeks. His neurosurgeon feels that the coughing/vomiting from RSV caused the aneurysm to finally give causing the massive bleed. The thought is that this is genetic. This is very rare. I have reviewed Andrew’s records from St. Vincent’s; Andrew’s CT scans state that an aneurysm was possible, but rare.  (Andrew also has had some other vascular abnormalities.) They do not know what to expect from Andrew regarding the rareness of his aneurysm, he will get an MRI/MRA every year from what we understand. He is followed by the Canadian stroke database for children.

Children’s Hospital of Milwaukee Neurosurgery, Neurology and Rehab will continue to follow him as he grows. He has home therapy weekly with an occupational therapist and physical therapist, plus sees PT & OT on an outpatient basis usually weekly.  He also has speech therapy once a month. Last September, Andrew started working on walking. He is a lot more stable now, but still is learning to deal with the weakness on his left side. He has very little functioning in his left hand, but if pushed to use it, he can a little. As he has been growing/learning, he has begun to understand more of what is wanted from him for therapy.  Cognitively he is a smart guy. With the extent of brain damage, the neurosurgeon stated that was where you would want it, if you had a choice.  So he is a very lucky boy, with all he went through. He is tough.

Andrew has celebrated his second birthday, Feb 6. He means the world to us and his story has affected many, many people. His story is amazing, even without sharing our terrible experience at St. Vincent’s. We have luckily had a lot of support, love and prayers. What we have endured would crush some people. We are strong, but it has not been easy. Like I mentioned before, the way his admission was handled was awful, it has scarred many people.  People do not understand why things happened the way they did and other hospitals’ social workers etc, stated that would/ should never happen.

I hope this story hits home somewhere. Even though conditions can be rare, does it hurt to do the appropriate tests to confirm a diagnosis or suspicion? I was the customer and my insurance was paying my sons bills, I expected the best care for my child. I believed in the healthcare system. Now even though I still work in healthcare, it is hard to trust. There should be a definitive protocol that must be followed. I have had nurses and one at St.Vincent’s prior to Andrew being shipped to Children’s Hospital; tell me “we see a lot of babies with Shaken Baby Syndrome.” I don’t care, put yourself in my shoes. My son is rare and we were going to be punished for it and went thru hell along the way.

I still cry occasionally thinking about the memories and tears come to my eyes as I write this letter. Emotionally it has been a tough road, for our whole family. But we have one tough, lovable, awesome little boy! We are so thankful for those who saved his life.