My Noble Purpose
Fighting The Good Fight
Our daughter Adeline passed away tragically, at far too young of an age. Adeline was diagnosed with an infantile hemangioma when she was just nine weeks old. She was started on a treatment called Nadolol for infantile hemangiomas at the Children's Hospital of Eastern Ontario where she was seen by a team of pediatric dermatologists. At this time Adeline was solely breastfed. She was given the medication as prescribed for weeks and it was effective in reducing the appearance of the infantile Hemangioma. On December 5th 2015, I found my sweet baby, lifeless in her bassinet. I desperately tried to revive her and was rushed to the emergency room where she was pronounced dead.
Six months later a team of police officers came to our home to let us know that Adeline’s toxicology report came back normal. No trace of heroin or narcotics or steroids or heavy toxic chemicals that are commonly used by drug addicts were found in her system. We then asked the team of doctors if the medication that she was prescribed by the Children's Hospital of Eastern Ontario had been tested during her toxicology report. The answer was no. We were invited to the coroner’s office for a closing visit. The corner was a woman, with plenty of experience. After reviewing Adeline’s reports, she concluded that there was no known cause of death for our little daughter Adeline. She stated that in 20 years of being a coroner she had not once found a child with ‘no known cause of death’. She stated that we did not fit the SIDS category. And this was a first for her.
We expressed our concern with the medication that Adeline had been prescribed. She agreed that that may have been a concern. She sent for tests to be done on samples of Adeline’s blood that were being held. Those tests came back six months later. Adeline was found to have 18 times higher than the recommended therapeutic dose for an adult receiving the same medication. Clearly something was wrong. Number 1, why did they not test for this medication in the first place? Number 2, why did I, the mother of the child who passed away have to ask for this test? Number 3, why did she have such high levels of Nadolol in her system? Number 4, did this kill her? Some of the answers are unknown and some are as plain as day. All of these questions have required investigation, research by professionals, legal attention, and plenty of time, patience, emotion, hard work and financial resources.
In nearly 5 years of research, we have discovered that Adeline’s stooling habits combined with the medication she was prescribed contributed to the toxic effects of the medication. Since Adeline was solely breastfed, it was normal for her to have a poop every 7 to 14 days. When Adeline was prescribed this medication, there was no indication that her bowel movements could affect her treatment. This medication was used to treat infants with hemangiomas. It is still used to treat infants with hemangiomas. It is simple to research and know that Nadolol is eliminated 25% through urine and 75% through feces. In Adeline’s case, most of the medication was not being eliminated for days and days and days. Leading to toxic effects and the sudden ceasing of her heart. You can read the article published on Adeline’s death in the American Journal of Pediatrics, “Death Associated with Nadolol”.
As a mother, who has done her due diligence to investigate and conclude on my own child’s unjustly death, I am determined to stop this from happening again.
- I will be sure to notify other hospitals, physicians, and pharmacists around the world of the toxic effect Nadolol can have on an infant.
- Acknowledgment also needs to be made to the drug companies who manufacture Nadolol.
- Nadolol is mainly used in infants to treat heart conditions. Paediatric Cardiologists need to be aware as well.
- I will work to create “Adeline’s Law”. This law would require hospitals, physicians and pharmacists to consider the stooling habits of an infant as well as the pharmacokinetics of a medication when prescribing medication or filling prescriptions.
- I will also work to change the approach to toxicology. I will advocate for the testing of prescription medications to be included in toxicology reports.
- The Living With Noble Purpose Podcast will continue to be an outlet for healing and storytelling, guidance and insights to growing a life well lived.