By Paul A. Byrne, M.D.
Aden is a 20-year-old college student who had abdominal pain on April 1, 2015. Exploratory surgery was done; her normal appendix was removed after finding no disease in her abdomen. As the surgery was ending, Aden’s blood pressure and heart rate went down. Since then Aden has not awakened. She has been declared “brain dead.” The doctors have related this to lack of oxygen. Aden continues to live on a ventilator with nutrition in a vein.
An apnea test did nothing to help Aden. Fanuel, father and guardian of Aden, directed not to do an apnea test. Nevertheless, it was done. This caused carbon dioxide and acids in Aden to go very high. This test was not good for Aden. When the doctors did not observe Aden taking in a breath, the doctors declared that Aden was “brain dead.” Once that declaration of “brain death” was made, which in most states is considered a legal definition of death, the family was told that treatment and care would be discontinued. Aden’s father needed to go to court to fight for necessary treatment and care for his daughter.
Aden has many signs of being alive, although the doctors have been declaring that Aden is “brain dead” since the middle of April. Laboratory tests show that Aden suffers from hypothyroidism (low thyroid function) at least since her hospitalization. Aden’s father has been requesting for weeks that thyroid medication be given to Aden. Aden, like every person, needs thyroid hormones to heal and to be healthy. The treating doctors have ignored these requests. Aden needs life-saving and life-preserving thyroid hormones. Attempting to restore normal levels of thyroid hormone is unlikely to harm Aden, but it cannot help her unless doctors are willing to try. Aden is not truly dead.
Like all patients on a ventilator for a prolonged period, Aden needs and has needed a tracheostomy since April 15. Also Aden needs complete nutrition, not just intravenous. For this, Aden needs a feeding tube or a percutaneous endoscopic gastrostomy (PEG) tube to provide nutrition through her stomach. My testimony in court was that Aden is not truly dead. Aden needs thyroid medication, a tracheostomy and a PEG tube.
On July 3, the court and hospital administrator agreed to allow physician(s) licensed in Nevada to evaluate Aden. A doctor on the medical staff of the Reno hospital agreed to evaluate Aden. This consulting physician believes Aden’s status to be grim; her chance of continued survival and awakening from her current state is a long shot but not zero. An ENT physician in Las Vegas (450 miles from Reno) came forward voluntarily to treat Aden but she would have to be transported to Las Vegas with an endotracheal tube, since doctors in Reno would not do the tracheostomy. Tracheostomy before transport would facilitate transfer and later treatment and care in a long-term care facility or her home.
Aden’s family is extremely grateful to the Nevada doctors who came forward to treat Aden. At least the entire medical community did not turn their back to Aden. The doctors treating Aden have declared that Aden is “brain dead.” Their testimony in court convinced the judge that criteria for “brain death” were fulfilled. The judge determined that my recommendation for thyroid hormone was insufficiently supported and theoretical. Aden has very low amounts of thyroid hormone. The brain (hypothalamus) makes Thyroid Stimulating Hormone” (TSH). TSH has a very short half-life and has been measured in the circulation of Aden. This test demonstrated that Aden’s hypothalamus is alive and receiving enough circulation to remain alive to produce TSH. In addition, body temperature is also maintained by hypothalamus. Therefore, if body temperature is maintained without heating blankets, the hypothalamus is alive. If the hypothalamus is alive and receiving enough blood supply to remain alive and working to produce TSH and maintain body temperature, although no signs of intracranial circulation can be detected by any current test for circulation to the brain, then other parts of the brain may also be alive and receiving enough blood supply to remain alive (despite no signs of intracranial circulation being detected by any current confirmatory test for “brain death”). Those other parts of the brain may be only functionally silent but not irreversibly damaged. But, they may need higher levels of thyroid hormones to heal and have a chance to resume activity. The whole brain needs thyroid hormones to resolve swelling, resume normal intracranial pressure and thereby resume normal circulation and function. Why will the doctors not treat a documented, treatable condition and give Aden the best possible chance to continue to live and hopefully recover?
An Ear Nose Throat (ENT) physician testified by phone that Aden needs a tracheostomy. Judge stated that she was taken back by the level of his confidence to do a tracheostomy without having reviewed the medical record. The ENT doctor knew that Aden has had an endotracheal tube since April 1. The ENT physician knows that a tracheostomy should have been done 10-15 days after being on an endotracheal tube. Of course review of the medical record, if there had been sufficient time for his review before the scheduled court time, would have been desirable, but could personal review of the medical record change the recommendation of a knowledgeable experienced ENT physician regarding the indication to do a tracheostomy?
The judge determined that continued treatment of Aden was not in Aden’s “best interests” and life support is to be removed in 10 days. How can it be in the best interest of Aden, a 20 year old college student, to have her life snuffed out by removing her life support without giving her thyroid hormone, adequate support of respiration and full nutrition?
To appeal the ruling is very costly; as Fanuel, father of Aden, said, “I have very little compared to the large amount of money it would take to appeal.” So what else can we do? Pray for all involved.
Dr. Paul A. Byrne is a board certified neonatologist and pediatrician. He is the founder of the Neonatal Intensive Care Unit at SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri. He is Clinical Professor of Pediatrics at University of Toledo, College of Medicine, and a member of the American Academy of Pediatrics and Fellowship of Catholic Scholars.
This article has been reprinted with permission and can be found at http://www.renewamerica.com/columns/byrne/150727.