Legal and Medical Resources to Empower Cerebral Palsy Families
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By Lee Vander Loop
In October, I wrote several articles titled “Diary of a Crisis” about a medical emergency we experienced with our daughter, Danielle. Danielle has suffered from severe spastic quadriplegia cerebral palsy since birth. She has always been non-verbal, non-ambulatory, severely neurologically impaired, and totally dependent in every aspect of care. We’ve maintained a Do-Not-Resuscitate (DNR) for Danielle for many years.
The diagnosis in October was double aspiration pneumonia and acquired pancytopenia, although we’ve now learned both diagnoses were incorrect. We were prepared to enforce the DNR with the October admission in the event that Danielle did not respond to treatment.
Pancytopenia is a diagnosis made when at least three hematology values are significantly and chronically below normal. We were told that a bacterium was attacking Danielle’s bone marrow, hampering its ability to make adequate platelets. Upon further review however, it was determined that rather than being bone marrow-related, Danielle’s pancytopenia was acquired from years of surgical interventions, medications and recurring pneumonias. Danielle responded well to the IV antibiotics and the pneumonia was resolved.
Danielle seemed to be doing relatively well for several months after that October admission, but we still had many unanswered questions. Lab results a month later showed Danielle’s platelet count was slightly improved but her red blood count was continuing to drop. We were also noticing increased swelling in her left leg, face and right hand. Her primary care physician attributed the swelling to “positional edema.” Her primary care doctor told me in November, “She’s fine, Mom,” when I expressed my continuing concerns over her still-low hematology values, the continued swelling and her stomach’s failure to tolerate even her meds, thereby forcing us to use the j-tube for all meds and feeds.
The winter proved difficult in managing Danielle’s comfort and care. Her airway became more unstable, requiring frequent suctioning and head positioning. The swelling didn’t seem to be getting any worse, but we were beginning to see a change in her stool patterns. We tested for bacteria and a parasite, but both cultures came back negative.
The first two weeks of April were extremely difficult. I suspected from Danielle’s respiratory status that she may have aspirated yet again, but with all the spring pollens out I was hopeful that her symptoms were due to the allergens in the air. I set a house rule that no windows would be opened while the pollen was flying and we would instead turn the air conditioning on as needed to keep the house comfortable.
The issues with her stools continued, as did my concerns. During the second week of April, Danielle began showing intolerance to her j-tube feedings. Danielle has always been on a feeding pump and was tolerating 60 ml (2 ounces) per hour of continuous feed. I was panicked when after running her feed for just 2 hours she became extremely nauseous and started heaving and gagging. I turned her feed off and made every effort to protect her airway from another aspiration. After multiple failed attempts to resume her normal feeding regiment over a two-day period, it was apparent there was something more going on. We took her to the hospital the morning of April 17th, and again the diagnosis was aspiration pneumonia.
Obviously, the first concern was to treat the pneumonia, so I was shocked when, with no explanation, the doctors discontinued the IV antibiotics after just 24 hours. Her respiratory issues did seem to improve slightly but she was still exhibiting an elevated heart rate, respiratory rate, and temperature.
When they suggested that they wanted to move her to the normal floor and prepare her for discharge, I made my stand. I brought the elevated vital signs and GI issues to their attention yet again. I was getting increasingly frustrated that no one seemed aware of Danielle’s base line history of hypothermia and bradycardia. It was becoming obvious to me that no one had taken the time to review Danielle’s history. I also pointed out they had not tried feeding her over the previous three days to see her response to her feedings.
To placate me, they started Danielle on a 30 ml per hour feeding regiment of a special pre-digested formula normally used with j-tube feeds. They ordered a sonogram of her liver, a fluoroscopy study of her pancreas and the traditional GI studies involving barium. I made it clear I would not take her home again without answers to my questions: why was she not tolerating her feeds; why the chronic elevated heart rate, temp and respiratory rate; why the loose stools over the past five months; why was her immune system still so compromised and her hematology values still dangerously low; and what was causing the edema which, over the course of that week, had become alarmingly worse.
My breaking point was the afternoon of April 22nd when I returned to Danielle’s hospital room and, in passing, the nurse mentioned that she had just given Danielle her insulin. Danielle had never been on insulin! I was shocked and inconsolable. I was told that one of the physicians ordered a glucose tolerance test and found Danielle’s levels were averaging between 275-600 mg/dL. I cried my eyes out in despair and dismay. Over a 24-hour period, they could not get her blood sugar levels under control despite trying different variations of insulin.
A year and half of pain, frustration, tears and fears and we finally had the answers. There had been mention of “chronic pancreatitis” 18 months prior when I had her in the ER for the swelling in her left leg and intolerance to anything in her stomach. At the time, no one made an issue of it. If I hadn’t inquired as to the results of the GI CAT scan that was performed with that visit, I’m sure I would never have known of her pancreatic issues. There was also mention that her liver’s production of albumin was low, but no one seemed alarmed or offered an explanation. I always insisted on copies of Danielle’s lab results and would do my own research into the anomalies. When I voiced concerns about her abnormal hematology values there was always some explanation given, but there was never alarm or a sense of urgency involved with any of my inquiries.
The afternoon of April 23rd, I had a life-altering conversation with Danielle’s attending physician. I was in the room alone with Danielle when the doctor and her resident entered. She told me tests indicated that Danielle’s pancreas was totally destroyed. It was not making the enzyme needed to help her body absorb nutrients, nor was it producing the cells needed to make insulin. This explained why she now needed insulin and why, although we were feeding Danielle 22 hours a day, she had literally been starving to death for the past 18 months and why her immune system was so compromised.
Another test showed Danielle’s liver was not making adequate amounts of the protein albumin. One function of albumin is to keep the blood from leaking through blood vessels which can cause fluid retention (edema) in the ankles, legs, lungs or abdomen. This explained Danielle’s edema and much more. My daughter was in late stage liver failure and her pancreas was gone. The physician asked me, as gently as possible, how I wanted to let my daughter die.
As if on cue, my husband and Donna, Danielle’s nurse of 25 years, entered the room. The doctor explained to them what he had just told me. We agreed that we would discontinue the insulin, take Danielle home and pray that through God’s mercy, she would pass peacefully in a diabetic coma, free of pain.
I was taking my baby girl home to die, and if God was hearing my prayers she would die in my arms. I had been prevented from holding my child when she entered this world due to the medical crisis she presented at birth. I would not be deprived of holding her in my arms when she passed from this earth and from my life.
We brought Danielle home the evening of April 24th. She went into a diabetic coma on April 27th, and remained in that coma until May 1st. At 4 p.m. that afternoon, Danielle’s respirations changed dramatically. I gathered her father, siblings and Donna at her bedside, put down the bed rail and took my child in my arms. I held my baby girl and talked to her through tears of sorrow and pain while we waited for the good Lord to come and reclaim his angel. It was the hardest hour of my life. Danielle took her last breath in my arms at 4:50 p.m.
She was finally free. Free of 27 years of pain and suffering, trapped in a body without even a voice. My baby was finally at peace. With her passing I’ve lost a large piece of my soul, but I thank God for the strength to endure that last hour, and for every moment of those 27 years that he entrusted her to me. Without ever having spoken a word in her life, my daughter taught me a level of love, perseverance, compassion and faith that surpasses anything in this mortal realm.
I would have given my life for my child to have spent one day enjoying the beauty of the world around her. I try to imagine the awe she’s now experiencing in her new body, and I pray she’s enjoying the wonders of God’s Kingdom as she dances at the Lord’s feet in Heaven.
Editor’s note: One of the missions of Cerebral Palsy Family Network is to help prevent birth injuries that occur as the result of medical error. We encourage expectant parents to educate themselves about obstetrical “best practices.” This advice from an obstetrician who delivered babies for more than 20 years is PART TWO of a four-part series.
By Giles Manley, M.D.
Birthing classes and many books about pregnancy help parents-to-be prepare for the birth experience and some of their choices, especially when it comes to managing pain. However, few deal with potential complications, preferring to leave that scary ”what if” in the hands of doctors. However, my experience as a practicing obstetrician for more than 20 years is that it’s vitally important for parents to know what standards of care are and how to advocate for themselves and their child if these standards are not being met.
These obstetrical standards of care, listed by trimester, apply to healthy, normal pregnancy only. Women with complicated pregnancies require additional monitoring and testing, which are not covered here.
You should expect to see your doctor every four to six weeks until you are 28 weeks pregnant. After that, your visits should occur every three weeks, then every two weeks, then once a week for the last four weeks.
Fetal movement should begin at 15-18 weeks. Because the placenta produces a substance that can affect how glucose is metabolized, all moms should be tested for diabetes at 24-28 weeks. Know your blood type. If you are Rh negative, have the baby’s father tested. If he is Rh positive, Rhogam should be injected at 28 weeks and should be re-injected after delivery. Failure to receive the second injection could risk future pregnancies. So nag until you get it! If your baby is Rh positive, mom should get her shot after delivery.
Pregnant women are routinely tested at 32-36 weeks for Group B Strep bacteria, which is the primary cause of meningitis in newborns. This should be a vaginal and rectal swab. Be sure both are sampled. If you test positive, you will be treated for this when you are in labor. Know your Group B status, and be sure that the hospital personnel know it, too.
Tell your doctor immediately if you experience bad pain and bleeding, unusual pressure or abnormal discharge at any time during pregnancy. Discharge with odor can be bacterial vaginitis, which, if untreated, can lead to premature labor. Urinary tract infections are common and must be treated right away, as pregnancy speeds this infection to the kidneys.
If you notice any decreased activity by your baby during the last three months of pregnancy, contact your doctor immediately. Your doctor’s office may advise you to eat something sweet and lay on your left side, and your baby’s movement may quickly return to normal. If it doesn’t, call back immediately and insist that you come into the hospital or office for fetal heart monitoring. Do not feel guilty about “bothering” your doctor after hours or insisting that you be admitted to the hospital for monitoring. Any disturbing change in your baby’s prenatal activity late in pregnancy is of great concern. This is no time to be shy or intimidated.
If you develop medical issues during the third trimester that warrant fetal monitoring, and you are told you may need to be induced after fetal testing, demand a C-section. Do not risk the health of your unborn baby over a misplaced belief that one form of delivery is better than another.
The above has been excerpted from Secrets to Safer Childbirth: Preventing Medical Errors in Pregnancy, Labor and Delivery.
Giles Manley, M.D., is medical director of the CP Family Network. If you have questions about whether standards of care were followed during your pregnancy and delivery, you may contact him at info@cpfamilynetwork.org.
By Giles Manley, M.D.
It happens thousands of times a year in U.S. hospitals: a healthy pregnancy turns into a nightmare during labor and delivery with the birth of a brain-injured child. Although many birth injuries are the result of circumstances beyond anyone’s control, others are preventable.
As a board-certified obstetrician for more than 20 years, and now as an attorney who represents children with preventable brain injury, I have compiled what I call a “prevention checklist” for expectant parents.
This information is critical to your baby’s safety during pregnancy, labor and delivery. Armed with knowledge about potential problems and standards of care, you’ll be able to insist on appropriate actions from your doctor and hospital staff.
Choose a birthing advocate, either the unborn child’s father or another birthing partner, who is prepared to buttonhole physicians, medical staff and hospital personnel to demand answers and action.
Ask your prospective obstetrician how often he or she is in the hospital and who covers for them when they’re not available. Learn all you can about your backup physician as well as your primary doctor. Your local medical board can tell you if the doctor has lawsuits pending. If there are three or more, look further into the circumstances.
Choose a hospital with a 24-hour, in-house anesthesia team. If you choose a midwife, make sure your birth will be in a hospital and not a birthing center. This ensures you have immediate access to an operating room in case an emergency C-section is necessary.
The following information applies to healthy, normal pregnancy only. Women with complicated pregnancies require additional monitoring and testing that are not covered here.
The above has been excerpted from Secrets to Safer Childbirth: Preventing Medical Errors in Pregnancy, Labor and Delivery. Be sure to check future issues for parts two through four of this four-part series.
Giles Manley, M.D. is Medical Director of the CP Family Network. If you have questions about whether standards of care were followed during your pregnancy and delivery, you may contact him at info@cpfamilynetwork.org.
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In October, I wrote several articles titled “Diary of a Crisis” about a medical emergency we experienced with our daughter, Danielle. Danielle has suffered from severe spastic quadriplegia cerebral palsy since birth. The past 18 months have been a constant struggle with medical professionals to get answers about our daughter's deteriorating health.
READ MORE
Birthing classes and many books about pregnancy help parents-to-be prepare for the birth experience and some of their choices, especially when it comes to managing pain. However, few deal with potential complications, preferring to leave that scary ”what if” in the hands of doctors. However, my experience as a practicing obstetrician for more than 20 years is that it’s vitally important for parents to know what standards of care are and how to advocate for themselves and their child if these standards are not being met.
READ MORE
