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Sep 1, 2007

One Year Ago

(edited to add photos 9/3/07)

It was the worst event of my life. And I replay it often in my head. Speaking about it, still makes me cry.

I was sitting in my chair with Ruby between my feet. She was sitting on the floor and I was using my legs as a buffer for her wobbly upper body, my hands hovering above and behind her shoulders. At six months, she was just beginning to sit up and attempt to roll over. We were waiting for her case manager from our local regional center to arrive. The big kids were upstairs playing and Julia was asleep. A knock at the door, without rising, I shouted out a "come in" and turned my head towards the door, taking my eyes off Ruby. As I turned my head to the right, she toppled over to the left, striking her head against the floor or possibly the foot of the couch. I pulled her up and held her to my shoulder, after checking for blood- said 'Hello' to the case manager, and excused myself to take Ruby in to the other room to soothe her. The case manager had witnessed the fall, she nodded her consent, and took a seat.

Ruby screamed and screamed. We went into the pantry, no lights, no noise. We paced, I rocked, swayed, ran the cold water... She fitfully fell asleep and I carefully put her down in her crib. She immediately woke and wailed. We repeated the soothing- I apologized to the case manager- and she fell asleep again oddly positioned in my arms. I put her down the second time and she stayed down. I returned to the case manager where we reviewed the incident, she had just witnessed, and her case in general. Ruby was often hard to soothe, but this was unusual. After we reviewed Ruby's care and goals for the regional center and I saw the case manager out the door I checked on Ruby. She had thrown up, but was still asleep. I immediately called our pediatrician and reviewed the information with a nurse. While throwing up after a head injury is certainly indicative of a concussion, Ruby had only fallen from a sitting position on the floor. More of a topple over than a fall. I was assured that "children don't get concussions from this kind of fall". We are regular customers at the pediatricians office and have a great working relationship with our doctor and nurses there. They felt confident in my abilities to watch over her and let them know of any other unusual behaviors.

I cleaned Ruby up and we went about our morning. She was somewhat drowsy and not quite herself. About 45 minutes later she threw up again. I didn't like the way she looked and called the pediatrician's office again. At that point, the nurses were busy with other phone calls. The receptionist took my message and told me they would call me back. I waited ten minutes and called them back. This was her head. It just did not feel right. The nurses again assured me that children do not sustain head injuries from such a simple fall but that if I really wanted to check it out, to bring her to the ER for x-rays, etc. I felt calmer, but still did not feel right.

As the crew and I were preparing to leave for afternoon kindergarten, the pediatrician's office called back and offered to have us swing by for a quick once over. We live, literally, around the corner. I took them up on the offer and went in. The nurse practitioner looked her over while I shook and cried. She declared that all appeared to be fine and we left. The nurses and receptionist checked in with me as I was visibly distraught- not a normal reaction for me- and I repeated that Ruby just didn't seem right and it was her head, not an arm, ya know?

Off to kindergarten and a check in with Käri, for a visual. We agreed that she didn't look quite right and that I would keep watching her and check back with the pediatrician if she started looking worse or not better...

Back at home, Ruby finished off a bottle and fell asleep again. Not unusual. I put her down in her crib and she slept for almost three hours. Again, pretty normal. I checked frequently, worried that she would stop breathing or choke on her own vomit. I got her up from her nap after she woke and carried her out to the kitchen to warm up a bottle, her normal routine. As I held her, I felt the retch begin in her belly, and got her to the sink in time. As she finished, I had the phone in hand with another call to the pediatrician. At this point, they were concerned enough that they wanted me to get her in for a MRI. They would arrange the details and get back to me in a few.

A quick call to Käri to pick up the kids at school and keep them until I knew details of the MRI. The pediatrician called back and wanted me to take Ruby to the local hospital for the MRI within the hour. I had five kids with me and it was back to school night for Käri. Previously, she had planned on staying at school throughout the afternoon to get ready for the evening. We decided that it would be easiest to just bring Ruby by herself for the MRI. Which meant Käri would have the other seven with her while she got ready for back to school night...Yeah, not so easy. Oh, and they all needed to have dinner since it was now approaching 4:00.

I dropped the kids with Kär and rushed off to the hospital. Waiting for the MRI, Ruby once again fell asleep. She slept through the MRI, beautifully. And we waited to be told the results. A nurse, I assume, because I don't really know who he was, came down the hall carrying a piece of paper and announced that we were to be immediately admitted to the ER and to please follow him. We were ushered into an ER exam room where we were quickly greeted by an ER Dr. who asked what had happened. I told him and he briefly examiner Ruby. I cried throughout the exam, not quite knowing what was really happening. A series of people came in and out of the room and some of the professionals gathered to talk, glancing at us from time to time. Two different teams of phlebotomists tried to get blood from Ruby- finally a flight nurse was called who was successful. Watching Ruby sick, surrounded by strangers, poking and prodding in a strange environment was torture, for her and me.

The on call pediatrician was called in and I was interviewed for the millionth time. She informed me that Ruby needed a full body scan. That information confirmed the fact that I was suspected of child abuse. I'm a social worker. I know the story. Full body x-ray to determine history of past breaks, healing etc. I was still not being told what they were trying to determine as far as, what was wrong with Ruby. I was a mess. I was being treated as a possible child abuser. It was obvious. Some of the professionals who interviewed me were not clear that I had been taking care of Ruby since birth. They assumed that she had just been placed into my care and that this head injury was why she was in my care. Once that assumption was corrected, attitudes and body posture, eye contact, tone, all would change. I would respond verbally, by saying I was aware that they were treating this as a possible child abuse situation. They didn't know what to do with me. Later, I found out the ER Dr. had described my behavior as weird.

What did that mean? How was I supposed to act? Ruby was my foster daughter, technically. Should I have been more distant? Pretend it didn't bother me because I was just the "foster mother"? Is it weird for a foster mother to care and love her foster daughter? Doesn't work for me. Also didn't work for me to pretend I didn't know of their suspicions.

The on call pediatrician called my pediatrician and discussed the days events as she knew them. I was finally informed that they saw a bleed on Ruby's brain and that she would need to be admitted to a hospital a few hours away. When I asked how she would get there, they informed me that she would travel be ambulance or be airlifted. Fresh tears. I queried if that was due to the urgency of her injury or because they were worried I would run with her. Again, the look of "Uh..." followed by "we think it is in her best interest".

The social worker came in and we talked for a bit. She was interrupted by the arrival of the flight team. By this time, 4:00 had turned into 8:00. Käri was home with the kids, having survived back to school night with seven kids in tow. Her 'parents' were very understanding and ushered her out the door as soon as her shpeel was over. I had spoken with her a couple of times from the ER. She wanted to come down and I wanted her to. But the other kids needed her at home. I'd continue solo. The flight team introduced themselves and one of them assured me that they would call my cell phone after they checked Ruby in at the other hospital. The social worker declined to interview me further and gave me a small smile along with the information that there were no past injuries noted on her full body x-ray. The first reassuring gesture of the evening.

I retrieved Ruby's car seat and said my goodbyes. I waited in the parking lot to watch the helicopter take off and picked up me messages on my cell. Our pediatrician had called and left a message to call her "no matter when" and left me her cell phone #. I called her. She was at her own daughter's back to school night but stepped away to listen to my tale. She expressed her sorrow that she was not the on call pediatrician that night as she could have reassured the ER of her experience with us as parents over the last six years, with numerous children. And while that would have been tremendously comforting, I'm not sure it would have changed the course. The medical professionals are mandated reporters. Had I been in their shoes, I would have had probably done the same.

While I wanted to race after the helicopter I went home to pack a bag. And then raced after the helicopter. The social worker had given me the phone number of the next hospital, so when I hadn't heard form the air flight crew, I called to see if she had arrived and how she was. The Dr. happened to be looking in on her when I called and the nurse connected me to him. He was also under the impression that I was just receiving Ruby into my care as a foster placement. Once he understood Ruby had been with me since birth, his tone also changed. He did report that she was awake and alert. Which was a relief.

While it was late, I remembered an old high school friend who was a nurse in the area. I took a chance she was still up and gave her a call. I thought there was a possibility that she worked in the hospital and could help me navigate whatever may be facing me. Teresa was up and more than willing to help me out. It turns out she didn't work at this particular hospital but wanted me to head to her house so she could lead the way to the hospital and accompany me inside. It was a relief to know she could come with me. We made our way to the hospital, arriving around midnight.

Ruby was asleep when we arrived, tiny in a huge hospital bed. She was in a hospital gown and had an i.v. She woke up for a little bit when we came in. A nurse entered and gave us the synopsis of her arrival and informed me that the Dr. would want to talk with me about some tests for the next day. Teresa asked some questions of her own and stayed until I settled in. I slept fitfully on the pull out chair/bed next to Ruby. It was broken, and did not fully extend to accommodate my 5'9''. My feet hung over the doorway so that each time the nurses came in they hit them.

The next day brought a series of tests, more prodding, and the Dr. who was a renowned child abuse expert, specializing in head injuries. Her name was familiar to me from a previous foster child who had come to us due to a suspicious skull fracture.

She was wonderful. She treated me as an equal, instead of a possible abuser.

She talked with me. I told the story again. Relayed my history with abused children and my absolute understanding of why I was being investigated. It didn't stop me from crying. Ruby had a brain bleed, from a very inconsequential fall. That doesn't happen. It makes my story suspicious and therefore me. She explained what would happen over the next day or two and what her thoughts were about what might be going on. She also told me that there was evidence in the first MRI of an old brain bleed. Although, very unusual, brain bleeds can occur from minimal impact and it was possible that the old bleed could have been a result of her actual birth. The Dr.'s did not feel that surgery would be necessary based on Ruby's behavior, but could not rule it out until they completed another MRI to make sure that the bleeding was stopping. The second MRI would also be used to date the old bleed. If they could determine that it had occurred at birth the child abuse suspicion would also lessen. Ruby was awake, but lethargic, definitely not herself.




I had tried to reach the case manager who had witnessed the fall, but she was out for the long weekend. My friend, Teresa, dropped by with bagels and coffee after she had dropped her own kids off at school. So nice. Käri was busy at home fielding calls from Ruby's social workers and others, who we knew from the past. There was a fine line that these professionals could not cross, they were subtle in expressing their support for our family. Julia and Ruby shared a crib at home and Käri reported that Julia seemed to be looking for her sister when she woke up. Mia and Abe were having some behavioral fallout at home after my sudden departure. Abe kept talking about everybody dying and Mia kept wetting her pants. Kär and I decided that it was better for her to stay at home to alleviate the kid's stress. One of my sister's is a Dr., and she continued to check in on me and offered to come stay at the hospital as well. The rooms were insanely small and I refused her offer for the moment. If surgery became the plan, then I would ask her to come.


Later that afternoon, a pediatric optometrist came in for an exam. She detected some bleeding in the retina of Ruby's left eye. The same side where she struck her head. When I asked if the two were related, the Dr. shook her head and said no. That torn retina's only occurred when a baby's head was shaken in a back and forth motion, not side to side. More tears. The implication was that perhaps I had shaken Ruby and struck her head on something causing the bleed and the retinal hemorrhaging. I could easily see myself on the other end. The social worker on the other side. While I knew what happened and even had a witness to Ruby's fall, I could not explain the injuries. I knew how it looked. I continued to imagine my children taken from me, and court. And Ruby, what the hell was happening to Ruby? The child abuse Dr. followed on the optometrist's heels and let me know that, again, while very rare, there are cases of children who suffer the retinal hemorrhaging, not related to shaken baby syndrome. She did not dismiss the optometrists findings, but assured me they were continuing to check out other possibilities.

The MRI was scheduled for late in the day. A pediatric neurologist would exam the films and date the old bleed and let me know how the new bleed was faring. I accompanied Ruby down to the test and held her while she went limp in my arms from the sedation. I handed her over to the technicians for the lengthy exam and went in search of some food. I entered a maze of hallways, lost, and encountered the child abuse Dr., somehow, who walked with me to the cafeteria. After a quick sandwich and some phone calls, it was back through he maze to the recovery room. Ruby was still sleeping, but I was able to wait with her for the pediatric neurologist's report. An assistant to the neurologist came to speak with me and informed me that the old bleed was more than likely due to birth trauma- just never detected- and the new bleed was not getting bigger. No surgery needed. It felt like a pardon. Ruby was okay. And no one was handcuffing me. Still no explanation for Ruby's current situation. Why this major bleed from a topple over? The assistant shrugged her shoulders- "we really don't know, just don't let her hit her head". Uh-huh. She's six months old- she has a whole lot of hitting her head coming right up... Learning to sit, roll over, crawl, walk, run, climb...???

The weight had been lifted. The cloud, the pressure, the questioning of my parenting, the second guessing of myself. Did I somehow hurt her, inadvertently, somehow? Did the kids hurt her on accident when I wasn't supervising close enough, or purposely?

Not any of those things. Whew!




They weren't quite ready to let Ruby go yet. One more night of observation and maybe one more lab test in the morning. We spent another night waiting. Waiting to see what would happen next. Waiting to find out what really was happening with Ruby. Waiting to go home.

After a last urine collection, we were cleared to go. I resented the nurse's pronouncement of "I see here that Dr. ____ has cleared you of suspicion of child abuse" Nice, was that really necessary? Couldn't she have just commented on Ruby not needing surgery and healing nicely? I was so glad to go.

Once home, Ruby was anxious for a long while. Worried when strangers approached, needing to be in eyesight for a while. Her brain bleed healed and we kept her confined to a hastily purchased tumbling mat until she was able to scoot herself off of it. After a couple of weeks we received a phone call from the child abuse Dr. who explained about Ruby's diagnosis. She was diagnosed with Glutaric Aciduria Type I, a genetic metabolic disorder, very rare. Brain bleeds and retinal hemorrhaging are not part of the disorder but they do seem to go together. And kids with this disorder and the bleeding are often misdiagnosed as victims of child abuse! An answer, finally.

The metabolic disorder diagnosis was very frightening, at first. Ruby continues to see a metabolic geneticist, and has just finished with the pediatric neurologist. Her head was given the final okay, no need for a helmet. She takes medicine daily, that is supposed to assist her if she should enter a metabolic crisis. We have a medical plan typed and in a folder should we need to visit the hospital again. For now, our job is to keep her healthy and alive- according to the geneticist. Fasting and dehydration could send her into a crisis which could cause irreversible severe brain damage and cerebral palsy type behaviors or death. Hospitalization is recommended for ANY fever or stomach illness.

One year later we have managed to avoid further hospitalization by being hyper vigilant anytime Ruby is sick. She is medicated for any fever and we have a regular supply of Pedialyte on the shelf. We continue to have a close working relationship with our pediatrician and her staff who are extremely fabulous and Ruby is a healthy thriving 18 month old.

13 comments:

TruLove said...

ET and I were just talking about Ruby this morning. How I remember that night. She is such a love, how fortunate that she got you and Karin (don't know how to do the dot things on the computer), as her parents. Give her a hug and kiss for me.

Tracey said...

Good God. That is so scary. I'm glad that they at least have a diagnosis for it, and that you guys have beena ble to avoid further problems.

Jess said...

Hi,
I just discovered your blog from Lelo. I love it, love it, love it. You have the most beautiful family (the beach picture makes me cry and laugh at the same time--so sweet).

I'm so sorry that the Ruby health crisis happened. What an awful experience. I'm happy to know that you and she survived it--and are thriving now.

I look forward to reading more about your adventures.

Jess

Mocha said...

Terrifying. And this coming from a woman who is often on the other end of these conversations of child abuse. You kept your calm, it seems, and that was the best way to handle it.

I'd have wanted to smack that nurse at the end, but it would probably be a bad idea and all...

Still, to have a good comeback after being through that hell is hard. You did it well and Ruby has lived with a lot of care and love in the meantime.

Nicki Mann said...

WHat a nightmare! It sucks that you and the baby had to go through that! Although the doctors and nurses didn't know you and couldn't be sure that you hadn't hurt the baby, there was no reason for them to have treated you with such disrespect! It really is the type of thing that could have happened to ANYONE! Especially when babies are first learning to sit up! I was once supporting a baby who was sitting in front of me on the floor, and when I looked away, she fell forward and hit her head on the floor! Of course I felt horrible, but it happens to everyone! How crazy that a simple fall like that turned into such an ordeal for your family! :(

the individual voice said...

So glad that they were throrough enough to get you that metabolic diagnosis after all you went through, guilty until proven innocent.

TallMomma said...

Wow... I'm so glad that you and your little sweetie have had a great year after all that trauma.
I too worry when my little ones fall or get hit by another child. I'm a foster/adoptive momma too & I would never held it together as you did... You are one strong woman! Thanks for sharing...

MG said...

I can't even imagine! Than you for sharing your heart. So glad that you at least have a disgnosis to work with ...

Chelley said...

I just discovered your blog and have only read this post but I just wanted to send you hugz how hard that must have been for you!!

I am at the very start of foster care and waiting for paper work to go though..

I look forward to reading more of you blog and learning from you!

And any tips or books that you could recomend to read leave me a comment on my blog (when you get time)

Tricia said...

Just for the record, I feel I should clarify that while social work has been my 'get paid for job', I have only worked for private non-profit agencies and not CPS.

And yes, it was terrifying and awful to be on the other side- and to know that even parents who do abuse their children have to go through this... because I do believe that quite a lot of parents who abuse and neglect their kids do love them and regret their choices.

A year later, I can say that the experience gave me some insight into how they are treated and glimmers of how they might feel.

cole said...

This just reminds me of what an awesome task of medical and social management I have ahead of me when I finish nursing school.

I am dreading my maternal/newborn and peds rotations just because it will be too hard to take. COming home to my little ones and thinking of the ones I left behind.

I remember being a frightened parent in the NICU with our son and how nurses were not supportive and sometimes judgemental. I hated that I hope to avoid it myself.

Ruby is so lovely and dear. How scary this must have been and I am so glad that some smart medical people figured out her issues.

as always, you are an amazing family.xxx

elena jane said...

wow, what a scary situation!! i'm so glad she is doing well! :)

Clare said...

I am a social worker too-- so I know how hard that line is especially when on the other side. I am so glad that you have a diagnosis so that hopefully you will never have to feel this way again. You are such a wonderful mother!