Survivor Stories

Justin Christian Wilch

Justin Christian Wilch was born on July 20th 1999 weighing 7lbs 14oz and 21 ½ inches long. He is our first child and some where around my sixth month of pregnancy I just knew it was a boy. I felt it in my heart.

I had a wonderful pregnancy with no complications other than testing positive for GBS, group B strept. This is a bacteria that 30% of all women carry. You cannot catch it or get rid of it. You must have at least four hours of IV antibiotics before you deliver so that you do not pass the infection on to your child.

I was in labor for 29 hours and my water was broken the entire time. Even though I had seven bags of penicillin, at one point it probably did no good, my body may have just gotten use to it.

Justin was born and did not have a very lusty cry. We found out that the cord was wrapped around his neck and his fetal monitor was put on him wrong. That explains why during labor they kept coming and flushing the internal monitor line because they were not getting a reading. Why I was not c-sectioned I have yet to find out.

We are not sure if this infection was given to Justin from the GBS or from the prolonged labor with my water broken for so long. There are several unanswered questions surrounding Justin’s delivery.

We were so happy that Justin was born. Our son was here and he was so darn cute! That evening my husband ran out to get some dinner and I walked down to the nursery to get Justin.

They told me that he had a "dusky" period and was symptomatic of an infection and they put him in the neo-natal ICU at Alexian Brothers Medical Center. He also had stridor, a breathing problem.

Justin was born on a Tuesday. On Thursday they transported him by ambulance to Loyola University Medical Center for the Stridor. I was very upset, we signed our discharge papers and left for Loyola. Alexian Brothers said nothing had grown from the blood cultures.

There a doctor did a larynscopy on Friday and found that it was a paralyzed right vocal cord. This happened from either the vacuum extraction that my OB/GYN used three times to get Justin out or from the cord being wrapped around his neck.

All in all, the doctor said it would improve over time. He was going to go home on Saturday. We were so elated. I vowed never to let him go. If I only knew what was coming. We had him home for a week.

On Wednesday, July 28th he saw his Pediatrician. He gained 6oz and was doing great. Saturday, July 31st is a day I will never forget.

He was vomiting and seemed to scream when we moved him but was fine once he was in our arms. My husband took his temperature and it was 99.9. Quite normal for a newborn.

We called the Pediatrician anyway. The nurse said the vomitting could be the formula ( I was breast feeding and formula feeding) and to change it to low iron. I did, but that did not help, he vomited again.

My husband took his temperature again, this time it was 100.2. We called the Pediatrician again and they told us to take him to the emergency room just to be on the safe side.

We did not have to wait at all at the ER. Loyola University Medical Center is a sister hospital to Alexian Brothers. A Neo-natologist was in the ER and saw Justin. He touched his fontanel and right then and there suspected meningitis. He wanted to do a spinal tap and we agreed. We left the room while it was being done.

We were brought back in and confirmed that it was meningitis. He said he started the antibiotics while the first vial of fluid was being drawn because it was cloudy. He probably saved my son’s life right there and I cannot even remember his name.

We could not believe it. How on earth could this happen?

He wanted to do a gram stain to find out what strain it was. I think that is how they do it. He came back in and told us it was E-coli bacterial meningitis. We were just stunned. I began crying and my husband just kept telling me it was going to be ok.

The doctor wanted to transport Justin to Loyola because he did not feel that Alexian Brothers was equipped to handle the case.

We thought an ambulance was coming again but Loyola Life Star Helicopter showed up 10 minutes later. They wasted no time in getting him to Loyola.

We went home and grabbed some clothes, I knew we would be there over night, at least for the next three days until we could take him home, so I thought. I was never so wrong and never prepared for what happened next.

At Loyola they put him on a ventilator and gave him Ceftriaxone. I am not sure if this was same antibiotic that the ER doctor gave him or not. They told us the next 48 hours were critical. The next few days were a blur. We prayed and cried.

There was a team of doctors on his case in seconds. They did a CT scan, it showed one infarct, on the left side of the occipital lobe and there was damage in other areas. They showed Hydrocephalus and they told us he would not live.

They just kept telling us our son was very very sick. They kept telling us how bad it was. I had just given birth to this little boy a week ago and I was afraid to get too close to him since I was told he was going to die.

His heart rate on that Saturday was 246 beats a minute. How can a babies heart beat that fast!?!?!?!?!?!? His vitals were bad. On Sunday, he was stable but not out of the woods. He needed a blood transfusion. He was having seizures and was given Dilantin and Phenobarbital.

Monday morning his heart rate was down to 179 and his vitals were good His oxygen level was at 98%. His doctor said he made a remarkable improvement.

On Wednesday, everything went south again and we were told he was not going to survive this. Most cases get much better within 24-48 hours, his was taking longer but the antibiotics were appropriate. He developed a Urinary Tract Infection and was diagnosed with Diabetes Insipidus. This is the bodies inabitlity to concentrate urine and his urine output was non stop.

They gave him DDAVP to control this. I over heard someone say that there was only one known survivor. I was convinced my son was going to die. This little guy that I barely got to know. All I kept thinking was "how are we going to get through this?"

On Friday they told us that his brain was swelling and that if he survived he would probably need a shunt. I was not too concerned about this because my friend has one and my husbands cousin has one. I was familiar with them.

The brain surgeon was not optimistic and told us that if this were his son he would not do it, that Justin’s CT scan was the worse he had ever seen and there was a chance he would be 90% disabled.

He did not think he could breathe off the ventilator and would also need a Trach.

We had a huge family meeting that afternoon and it was decided that once they took him off the respirator, we were not going to make any heroic measures to resuscitate if he could not breathe on his own. I decided to stop this hideous suffering of my child.

On Sunday August 8th they told us they were going to remove the ventilator. This was going to be our darkest day. I could not stop thinking "my son is going to die today, my first child, the child we so anxiously awaited. We were married five years and finally decided we were ready to have children then it was going to be taken away from us"

They pulled the ventilator out and put Justin in my arms. My husband I just sat there and cried and waited and waited. The head of the PICU came in and told us from what she was seeing on the monitor she did not think he would survive the afternoon. I started to breathe very fast and very hard.

"This is not happening, this can’t happen, my God how does someone do this?" A nurse telling me to calm down, breathe in, relax. How am I suppose to relax when I am holding my child who is going to die? Someone please explain this to us!!

That afternoon came and went. Justin was just nestling in my arms or my husbands arms, we were taking turns. By the evening his vitals were normal. He was breathing on his own, a little erratic but on his own. We had one scare during the night, the nurse came in and the look on her face scared me but she was just coming in to give him is antibiotic.

The morning came and they took all the monitors off him and put him in his own room out of PICU. We were really confused. Yesterday he was suppose to die, today he is getting his own room? I did not understand what was going on.

They decided to put a shunt in and went in on Monday, August 16th. The surgeon came out and said he could not put it in, they found a pus pocket on back left side. He wanted this to be cultured because if he put the shunt in, and the pus was infected, he could send the infection down through Justin’s body. I was grateful for his decision.

They went back in and put the shunt in on Thursday. Justin was wheeled back in PICU and his eyes were open and he was very alert. He was vomiting a bit but that was normal with the anasthesia. A therapist came in and was doing some positional moves with him. She put him on his stomach and he lifted his head right up!!! I could not believe it.

The next day he was put back onto the PEDS floor and another therapist came in, again he lifted his head right up. Justin was still on the antibiotics and his entire course was 41 days long. The infectious disease doctor did not want to take any chances with him.

Days passed and Justin was doing ok. They suggested a G-tube because they did not think he could suck or swallow. He was going to town on a pacifier and my husband pushed the subject of getting a therapist in to see if he could do it. Thank God he did because Justin went to town on the bottle. It took him a long time to take two ounces but he did it.

He went home on August 26th with a central line that we administered his antibiotics through and flushed the lines each morning and after the antibiotic. He also had a feeding tube down his nose. We were to put any formula that he did not finish down this. Justin pulled this out himself a few days later and then he really went to town on the bottle.

It was a very tough time. This was my entire maternity leave. A home health nurse came once or twice a week to give us a hand. He seemed like Loyola’s baby for so long, now he was ours.

On September 1st he was vomiting pretty badly. His pediatrician wanted him sent back to Loyola. (We switched to a Loyola pediatrician so that we can retain the Loyola specialists through our insurance.) I was so upset, what now???

She wanted to make sure that it was not the shunt. She is very good with him and leaves no stone unturned. The scan showed that the shunt was fine. I was convinced it was the formula but they did an ultrasound thinking it might be pyloric stenosis, where a muscle does not form right by the opening to the stomach.

The central line came out on September 13th. I was so happy that I was finally able to give my child a real bath and scrunch him up in my arms.

For the next two weeks we were to remain guarded because this type of bacterial meningitis could come back. I was defeated again. I decided that it was not going to come back and it did not.

Justin is now four months old. He takes OT and PT each week which was started September 20th. He is almost 14 lbs now. He passed his hearing test. He coos and babbles and laughs.

He has full range of motion and can hold his head up with almost no support. He can almost sit up on his own. He brings both hands to his mouth and is very strong.

He no longer has to take the DDAVP for the Diabetes Insipidus, it was gone in late September. Sometimes that is temporary in children who have had brain trauma. Perhaps when the shunt took care of the swelling, it relieved that too.

We are concerned about his vision but his neurologist said that he thinks he can see but he may have what is called Occipital Inattentiveness and that it will improve over time. He saw an ophthamologist who found some optic atrophy. Since it is acquired, it will not get worse. He said he is not blind but we will not know his vision abilities for a while.

We do notice improvement. He has started to focus on some things and he will play with little toys that we put on his chest. He is not grabbing too much yet but I have to remember that he spent four weeks in the hospital and he did have damage to the brain.

He has just started to hold onto a rattle. His therapists say he has improved each week. I have done so much research already and am amazed. One of his doctors told us that a babies brain is remarkable and has such an ability to compensate. We just hope that this happens.

We do his therapy at home every day and I do infant massage on him. He gets so much love from us, he just has to feel it. We always hold him and talk to him. We play music and sing and talk to him all the time. Every time he laughs and smiles I fall in love with him.

This is very scary and we will never ever forget this. My husband and I have always been close but this has made us even stronger, we have one common goal and everything else is so superficial. Each day is hard and offers new challenges and new rewards. My life is so different. I am a very different person.

You don’t walk away from this the same person. I won’t take half answers, I want full explanation of it all. I never thought this would ever happen. I took such good care of myself during my pregnancy. The doctors said that since he was full term and has a great set of lungs and a good heart, that helped him pull through. His vocal cord seems to be fixed as his very healthy cry suggests.

We just pray and hope that what ever plan God has for us and for him that he gives us strength to handle it. I often repeat this to myself:

God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

Justin is a miracle. He has beaten the odds so far and I hope with love and support and therapy he will beat many more. I decided that this disease landed on the wrong kid. Justin will not take this lying down! He is such a fighter.

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