MONICA RANDALL: Thank you for the opportunity to share our story. It is therapeutic to do so. I will warn you, I am a crier by nature, not by pregnancy. So if you’re a sympathetic crier, get out a couple of tissues. This is a story about our family, what happened to us has affected our entire family. My husband of 16 years, who’s here. My daughter who is 5 and a half, and will affect my unborn child as well, and I think you’ll understand as I share our story, just why. Benjamin is now eight years old. Our introduction to fetal injury occurred in ’95 when my husband and I were expecting our first child. We had been married eight years and had waited a long time for children. We had suffered a previous miscarriage and we found out in January of ’95 we’d be expecting a child in September. I had a normal pregnancy up to Memorial Day weekend.
This was when I was about 26 weeks along and on Saturday of that weekend my husband and I decided to meet some friends in the mountains. And we traveled about two hours to spend the day mushroom picking and just enjoying a nice Saturday afternoon with them. And I was 26 weeks pregnant and upon returning home in the evening at about nine p.m. we were driving down a narrow two-lane highway and my husband was driving and I was in the passenger seat of our ’93 Ford Taurus. We had purchased this car for its crash survivability statistics, having lost two very close friends and their newborn baby only 10 months previous to that in a head on collision, we went right to the computer, found some statistics and went out and bought a Taurus.
We had passed a number of vehicles on our ride home and had approached the rear of a motor home which was pulling a horse trailer. My husband had intended to pass the motor home which was traveling about 50 miles an hour so our visibility was not very good, we were looking right into the rear of the motor home. And the first thing that happened was a loud bang caught our attention and I glanced up to see a cloud of dust and what appeared to be something rolling in the ditch which then hit a telephone pole. An instant later my attention was drawn to the undercarriage of a car barreling toward us. I could see sparks shooting out from where the car was sliding across the pavement coming towards us. My husband yelled hang on and we were hit on the driver’s side. Our reaction time for all of this that I was taking in was approximately one second. So this is our vehicle on the left and the driver of the other vehicle on the right. Our car came to a sudden jolting stop and we opened our eyes and surveyed our condition. Paul asked me if I was okay.
Out the driver’s side window just a few feet to the left was the vehicle that hit us, which was now on fire just a few feet away. And the other driver was hanging upside down, screaming in Spanish. We rapidly climbed out of the car on the passenger’s side, passersby’s stopped and comforted us. As we waited for the emergency crew to arrive I looked back at our Taurus, noting that the air bags were deployed, and I did not recall that happening at the instant of our car accident. We were told by others that a drunk driver had sideswiped the motor home in front of us, tearing the horse trailer from its hitch, which launched the vehicle toward us, hitting us head on. We were traveling approximately 50 miles an hour when we were hit. The state patrol measured our vehicle stopped in only five feet. That means we went from 50 miles an hour to zero in only five feet.
We were transported to the local hospital where we were examined in the emergency room. Paul sustained a broken thumb, a large contusion to his chin and I had seatbelt contusions where my shins had hit the dash. But the main concern was for the baby. It was not until several hours later when we were able to have an ultrasound by a very upset radiologist who was a doctor on call. He declared he could use more training in placental abruption and that this was our greatest concern. He suggested that my OB would probably order a detailed ultrasound once I saw him. He performed this ultrasound, informed us the baby had a heart beat and there was no sign of placental abruptio. The drunk who was sharing the emergency room with us was stitched up without anesthesia. He was read his rights and then released from the hospital that night. The county policy where we live is such that they do not pay for the medical expenses so that they release injured defendants from the hospital. He had no license, no insurance, and admitted to drinking 13 beers prior to our accident. His blood alcohol content was .26, so reasonably thinking, he was probably still intoxicated when he was released from the hospital.
I was admitted to the hospital for observation. Not long after being admitted the baby’s heart rate decelerated to zero and then started back up again. We summoned the nurse and she suggested the baby probably grabbed his umbilical cord and I began having labor pains and this was extinguished with several shots of terbutaline. After 24 hours I was released from the hospital and ordered to bed rest. I saw my doctor after a few days, expecting he would do a full workup to insure the baby wasn’t hurt. After all, we’d undergone a very serious car accident at a very high velocity. When he checked, my cervix had softened and I had started to dilate. This was when he made a statement we would hear time and time again over the next several years. Our baby, which was not still living, was apparently well protected in the womb by the nature of the fluid filled sac and the workup was not indicated in our case. If the baby were hurt he would’ve been aborted. We sighed a bit of relief and went home for rest and recuperation. When I saw the doctor the following week, to my surprise, he released me back to work. I had a few signs of delivering early, I was dilated to three for the duration of my pregnancy, three centimeters, and I had intense Braxton-Hicks. But beyond belief, I made it to my delivery date and this was when my doctor decided induction was in order.
Four days overdue, on September 7th, ’95, after seven hours of labor, Benjamin was delivered. He was a healthy baby boy, eight pounds, two ounces, delivered vaginally with an Apgar of eight. The following morning our new pediatrician arrived declaring our baby boy had the most amazing soft spot she’d ever seen. It was irregular in shape, covering nearly a fourth of the top of his head, essentially what that means is looking down at him, a fourth of his bone was missing and it extended over into, it was on this side, and extended over into this finger-like projection, so this was all missing, and then down into what you might think looked like a crack right here above his eye. It measured eight by five centimeters, so it was very large. She ordered a skull CT scan which was said to be normal. They did find a minor anomaly to his left ventricle and told us that it was within normal limits. He had blood work which was normal and she declared it was highly unlikely this was caused from the car accident because he was well protected in the womb by the fluid.
When he was three months old he was seen at the children’s outpatient clinic and we were told it was the most unusual soft spot they had ever seen. Again we were told it was most likely not the result of the car accident because children are well protected in the womb and not likely harmed by car accidents. When he was close to a year old we were seen by the cranial facial clinic in Seattle Children’s by a team of doctors and they were again amused by his most amazing skull defect they had ever seen. They declared it was not the result of the car accident again, as children are well protected in the womb by the fluid and that it was just a strange phenomenon. They said if he had been injured they would likely know because brain damage would be associated with a skull injury. Benjamin grew and developed. He learned to crawl at about eight months, walk at about 12 months and was a very quiet, content baby. He was diagnosed with a lazy eye at three months of age.
During this period of time the drunk driver who hit us was convicted of DUI and given a deferred sentence meaning that he would attend alcohol rehabilitation because this was his first alcohol related offense. And the state of Washington paid for this since he was unable to pay for it himself. He did not serve even one night in jail, in fact if he followed through with his rehabilitation program his conviction was deferred, meaning it’ll never come up on his record. When Benjamin was two and still not talking I expressed my concern to his pediatrician who said he must just be a late bloomer. He was seen several times at Children’s in Seattle who indicated by age 2.5, or two and a half, that Ben’s skull defect was apparently not going to close on its own and it was time to repair it. So you can imagine having a toddler running around with an enormous hole in the head.
And on July 28th of ’98, only a few weeks after the birth of our second child, Shelby, Ben underwent an operation to close his skull defect. They opened him up from ear to ear, oops, I’m going to pass this one, I want to come back to it. They opened him up from ear to ear, approximately 60 stitches and placed a product called *"Bone Source over Titanium Mesh." We approached his surgery with apprehension and also a sense of relief that this part of our life would be over. Following Ben’s surgery, the next morning, the chief neurosurgeon came into the intensive care to check on Ben and he indicated that the surgery went well and we could expect a rapid recovery. Ben would be in the hospital only a couple of days. He turned to leave and leaned against the door frame and he stated, “Oh, by the way, Ben had an incidental finding on his pre-op exams and apparently the right side of his cerebellum, his small brain in the rear, had stopped growing in-utero.” This condition is called cerebella hypoplasia or small right lobe of his cerebellum and he told us not to worry about it because Ben was doing well. The doctor turned on his heels and left.
Paul and I had just received a bombshell that would forever change our life. We waited an entire day before our regular doctor at Children’s could even tell us what this condition was. We were greatly concerned at the age of 2 and 11 months Ben was not speaking and there were other growing concerns. We went and met with Ben’s head doctor at Children’s in the cranial facial department and he explained to us that it was his belief that Ben sustained direct trauma to his forehead, resulting in a contra coup brain injury to the rear of his right lobe of his cerebellum, essentially it’s much like shaken baby syndrome. So not only was there direct damage back here, but everything in between probably had little cuts affecting brain growth. He was willing to say that since there was a skull injury and there was a brain injury, that logic would tell you that the cause from trauma from an external source. He believed the skull defect was a deformation rather than a natural malformation. He also said you could expect Ben’s brain to be affected at the opposite side of the point of impact and it was. It was also surmised that Ben’s head could’ve been pinched between the seatbelt and my spine as my body wrapped around him at the point of impact. Ben was later seen by the head neurologist at Children’s who said his cerebellar abnormality was not only rare, but the rarest of rare's and that it dated to 26 weeks, the exact time of our car accident. There are only a few cases of one lobe of the cerebellum in the medical literature. The only suspected cause of this abnormality is infarct or stroke to the cerebellum. It is not associated with any genetic disorder.
Ben underwent multiple developmental workups at this time and he was diagnosed with severe speech delay, a *proxy of speech, and *disarethria, gross and fine motor delay, low tone in his extremities and sensory dysfunction and auditory processing problems. He was enrolled in aggressive speech therapy, over 450 to date, public developmental and preschool, private occupational therapy and he eventually has qualified for state disability. The cost of having a child with special problems is pretty high. I wanted to go back to this other picture I had right here. This was an early sign of problems, even before his surgery, he’s about two and a half down here in the yellow and about one and a half up here. You could not hug him. He just would not tolerate it. He needed a very large personal space and come to find out that’s because of his sensory dysfunction and the skin not feeling normally, it actually aggravated him, much like autistic children have, he’s not being diagnosed with autism either.
But children with cerebellar problems often have symptoms that overlap. At the age of four he underwent a neuropsychological workup and we were told he was approximately 50 percent behind in his development. We were shocked with the news that there was potential he may never reach adulthood neurologically or developmentally. Four years after our accident we settled our personal injury case with our insurance. Since the drunk had no insurance we were dealing with our own company. Since we had no workup when Benjamin was in utero, we were unable to prove causation of his injuries were a result of the car accident. The insurance company hired multiple doctors who said that babies are well protected in the womb from car accidents, despite the fact that our doctors told us they believe the root cause was trauma. We were advised we should settle or risk losing what little was on the table for Ben, so Ben was able to get only $50,000 minus 30 percent, which is in trust for him.
In dealing with my grief I threw myself into understanding what happened to him. I researched brain neural plasticity, cerebellar dysfunction, cerebellar abnormalities, sensory dysfunction, multiple alternative treatments and fetal injury. What I found when I went to Medline, which I’m sure you all know what that site is, was that there are very few case studies done, most of them are singular case studies on what happened to a few babies that have gone through car accidents. There’s no correlation between what happened to the mother versus what happened to the child. And I was surprised that the whole medical community could come to a conclusion that babies are well protected on just a little bit of information. At this time we undertook neural developmental therapy, brain *gym, aggressive speech therapy, music therapy, swim therapy, cranial sacral therapy, nutritional supplementation, sound therapy, fast forward one, and we’ve just completed fast forward two, which is a speech enhancement program. I home schooled him for 18 months, which was an adventure. Reading to him, or to both children, over 5,000 library books.
Personally the course of what happened paralleled the grief cycle for me personally, denial, shock, anger, questioning, crying, bargaining, panic, depression, withdrawal and finally acceptance of the loss. There are several years filled with tears. Each time Ben is worked up it just cracks open the trauma door every time. And this is something that occurs every time we sit down with his therapists, his teachers, his psychologists, and review his development and his academics. As you know, if you have a child with special needs it affects your marriage, your family dynamic, and self esteem of your well children. As the focus of your routine is on the needs of your special child. Also in our case, the course was much complicated by grief of not having justice in the court or the legal system, but on the other hand, nobody could repair the damage in total even if we had justice. We came to the realization that it could’ve been so much worse.
There are blessings which are in disguise of having a child with special issues. My decision to stay home from work, my care and concern for both of my children is no doubt different than it would be otherwise, spending extra time with the kids, being his teacher, his advocate, his therapist, his librarian, his doctor, his rehabilitation specialist have all been enormous blessings. I’m a different person for the experience. Milestones are a thing not to be taken for granted. Today Ben is eight years old, he is doing well in regular public school. He has a special education plan which includes considerable aid time in the class to help him with handwriting, staying on task, he gets pulled out for speech and occupational therapy.
There are milestones which have been difficult for him including potty training, trying new things like going down the slide seem to be intimidating to him, learning to ride a bike or sports that involve a ball or learning to read. He was tested to be approximately a year and a half behind his peers at the last work up. And he is doing better than the experts predicted but he will always have a life long learning disability. Despite this he is a really bright, intelligent boy with a great sense of humor, and exceptional spatial memory and his major characteristic is persistence. He is into transformers, he’s very good on computer games, he plays with friends and he is into what a lot of other eight year olds are into. We did have to retain him in first grade which was just another adventure.
I have met several other families over the course of the last several years who have suffered trauma in utero. One that stands out is a baby born without hands or feet who suffered a car accident early in her pregnancy, at about six weeks. Ben’s *parapro at school had a baby born nine weeks early due to a high speed car accident with a drunk and placental abruption. This baby was born with a seatbelt mark right across her legs, seatbelt bruising. There has been another family whose child suffered, microcephaly and cerebellar hypoplasia, so this is a pretty devastating problem. And they are not sure for certain that the cause was due to in utero trauma, after she was T-boned after a high speed accident which spun her car around into a fence at 25 weeks. There’s no doubt in my mind that Benjamin is a true miracle. How we managed to get through such a high-speed accident without having a placental bleed or a life threatening injury is by the grace of God. How he managed to sustain such a traumatic head injury and go full term is again of God.
Perhaps it is for this purpose today that Ben could be an example of babies who survive such an accident to prove babies are in fact well protected in the womb, but they are susceptible to trauma in utero. It would have been so much easier on all of us had he had a full work up post accident. The delayed diagnosis, the lack of proof for charging the perpetrator and frustration in proving our legal case. But most importantly, if we had had an earlier diagnosis, Ben would’ve received the benefit of early education intervention from age zero to three when the brain is growing at a remarkable rate. This is what grieved me the most. Thank you, Hank, for the opportunity of being here today, to my husband for years of support and encouragement and to this devoted group of researchers. Thank you.