I will briefly describe below what happened to my baby girl, Ella Grace. To begin with, she had a CT scan 7 months prior to her death because our pediatrician was OVERWHELMINGLY concerned about the growth of her head circumference from one check up to the next, and if her condition (hydrocephalus, benign enlargement of the subarachnoid space (BESS), chronic subdural hygroma, chronic subdural hematoma) had been made aware to me or our pediatrician, it could have been treated or watched by a pediatric neurologist as protocol dictates in all medical literature I have researched, and thus it could have prevented her death.
Ella Grace was 18 months old and learning to walk. I know this is late, but she was born at 30 weeks due to my having HELLP syndrome. She had EVERY test under the sun while in the NICU, but rarely a brain scan as she had a Grade 1 IVH which was reabsorbed a few days after birth (extremely normal progressions of preemie medical standards). She was sent home being the picture of health; growing and on the high side of all physical milestones associated with babies. She was a VER STRONG and healthy baby. But, as with most preemies, we were hypersensitive parents and took her to the doctor for almost everything. She was delayed in walking due to what I thought was prematurity, but after doing research now, I am seeing a pattern as she had ataxia (an imbalance when walking-stronger muscle control on one side-a direct side effect of hydrocephalus or BESS). When you held her left hand she could move almost without support, but when holding her right hand she would lose muscle control and almost walk in a circle.
In addition, her eyes would divert at times (one looking straight and the other going out), so I took her to the pediatric eye doctor 3 times and explained that she would do this at times with associated squinting of her eyes and face (again a side effect of her PREEXISTING conditions as stated above). They told me it was nothing and to stop worrying, made a follow up appointment for Aug 22, she had already passed then.
At ten months of age she had an episode of violent vomiting followed by complete lethargy. We immediately rushed her to the pediatrician. He examined her and sent us to the ER IMMEDIATELY because her head circumference had grown so drastically from her last visit that he believed she had hydrocephalus. Her frontal lobe had started to bulge as evident in photos and had begun to look very large to me, but I am not a doctor. We had a CT scan done (the main reason for us being sent to the ER) and they also tested her for a UTI when she did not present symptoms associated with a UTI as I have now found out. They diagnosed her with a UTI without seeing the final culture results and sent us home with antibiotics. I asked about the CT and he said there was some darkness between her brain and skull in the front but it was just fluid from her forehead being large, and there were a few dark spots on other areas of her brain, but do not worry it was a only UTI. Relieved, we left for home to care for our daughter. Still not satisfied, I then took her to a geneticist who never even looked at the CT and she said that we probably come from a family with large heads and that if my daughter was not walking by 15 months corrected to get her physical therapy.
I always felt nervous about this, but trusted what I was told.
At this point, February of 2008, my pediatrician had still not received the CT results or any of the emergency room results including CT scan.
My daughter became ill again when she was just over one year old and displayed the same symptoms as she had when they had misdiagnosed her with a UTI at ten months. I thought it was the same thing and took her back to the ER and they ran the UTI test, said she was clear, NO BRAIN SCAN even though they had the ten month old CT results at their fingertips, said she had a bit of bronchiolitis and then sent us home with antibiotics again.
Due to the 2nd diagnosis of a UTI, I took her to a kidney specialist and he ordered a grueling test called a VCUG. To see your child in pain, and knowing that it is for her own good is one thing, to find out after that the test should have never even been performed is a knife in the gut. A little calcification in her kidneys, but nothing else.
In April of 2008 Ella became ill with a flu-like cold. We took her to the pediatrician yet again and, and they had still not received any of her records from Dell, so they tested her for a UTI again. During the visit, they finallt received the records after calling numerous times and saw she had NEVER had any UTI ever in her life, and all of the subsequent testing that Ella went through (VCUG) were totally and completely and painfully unnecessary. She ultimately had a normal childhood illness of Roseola which resolves on its own (almost like chicken pox). At this point, our pediatrician still did not have the records of her CT scan to my knowledge.
On July 2nd (19 days before her 18 month birthdate), my daughter fell down while we were shopping at a department store. It was an accident, but she was determined to walk so we let her while holding her hand, normal baby procedure (if your daughter did not have hydrocephalus or BESS or any of the other preexisting conditions that I now know she had). She hit the left front part of the left side of her head on the floor. She cried loudly and then I realized there was something not right, and called the ambulance within 3 minutes. The ambulance came and took her to Dell children's hospital. They stabilized her and then took her for a CT scan. She had very bad bleeding in her brain, and a lot of fluid. I was told this was not common with her type of fall. The surgeons did everything they could, I am sure, but due to her existing problems I believe their hands were tied medically, and to our complete devastation, she did not make it out of surgery.
When I received the death certificate and the cause of death is listed as subdural hematoma, with UNDERLYING causes being subdural hygroma and thoracic hydromyelia. I began researching everything I could and all related information. Once I reviewed this I did research online and saw that an overwhelming majority of the time these underlying conditions are results of hydrocephalus and BESS and could have been watched and treated if diagnosed timely. The saddest part of this whole disgusting situation is that children can usually grow out of this condition after age 2, and then the extremely important extra caution and care they need can be put to the side and normal development can resume.
Then I ordered her autopsy report and even MORE preexisting information is clear. Chronic Subdural Hematoma (listing specifically “BY HISTORY” and not as a result of her injury), Hydromyelia – mid and distal thoracic cord, Large central Cavity in midregion of spinal cord, increased extraaxial fluid collection over the frontal lobes, to name a few. I have been researching for weeks about the connection between these conditions and her dying. Her death could have been prevented if we were informed from her medical caretakers of what her condition was and what we needed to watch out for, while she had the fluid on her brain. We had NO IDEA there was anything wrong with her other than parental instinct subdued by doctor dismissiveness.
I have since gotten all copies of her medical records from her 3 visits to Dell Children’s hospital, and the diagnosis of BESS is eventually inserted into her Nov 27, 2007 visit. I see it in black and white in front of my face when I read it and am numb trying to figure out WHY NO ONE TOLD US.