About Ayden Rae
The Story of Ayden Rae Pack
When I became pregnant, I was referred to Loma Linda University Medical Center. Unfortunately, due to insurance constraints, I was only able to visit doctors within my insurance network, and we began the downward spiral of medication denial and an early discharge from the Barstow Community Hospital.
Less than ten weeks into the pregnancy, my illness was obvious. I had suffered significant weight loss, extreme dehydration, and placement of a risky IV PICC line due to the constriction of my veins and requirements for daily re-hydration for over a month.
My anger and anxiety at the discharge notice was terrible. My insurance instructed the hospital to release me despite the hospital’s advisement that I was too ill to be released. I pleaded with the medical staff for assistance and was told, “Sweetie that is just how insurances are. Come back through the ER and maybe we will be able to re-admit you.”
Furious, I contacted our provider upon returning home and was told that a home care agency would be managing my care and to refer to the hospital discharge forms. I contacted the home care pharmacy listed on the form and was advised that our insurance had contacted the pharmacy, but that my care had not yet been approved.
I was stunned and felt that the lives of me and my unborn child were not being taken seriously. Consequently, throughout my pregnancy, my husband had to drive me to the hospital each evening for treatment that I could have been receiving at home with less stress and much less of a cost to my insurance provider.
Less than 24 hours after my first forced release, I was readmitted to Barstow Community Hospital. From my hospital bed I called our insurance provider, informed them that I had been readmitted, and that I was not leaving until my home care was ready.
Our provider assured me it was and they were recommending discharge again.
A quick call to the home care pharmacy found my fears realized as I was again informed that the home care had not yet been approved by our provider. I was told, “If they discharge you right now, it will be an unsafe discharge.” They suggested I refuse to leave the hospital.
I immediately called our insurance provider and informed them that I would not leave the hospital until the home care pharmacy verified that my home care had been signed off. As I was speaking, a nurse informed me that our provider was refusing to pay for further services. With the refusal of service from the provider, the hospital needed the room for other patients. The nurse began to remove my IVs.
Alone, ill, and heartsick, I begged to remain until my husband could arrive from work to take me home. Having lost the ability to eat or drink, I was weak from losing three to four pounds a day. I was seized by the fear that if I was forced to leave, I would not survive the night. I was also terrified that should I be returned by ambulance, I might be refused care.
In that emotional and physical state, I was strongly advised that I was being discharged and that the hospital could arrange bus or cab transportation for me. There is no way to adequately relate the way I felt at this time.
Finally, my husband arrived and bluntly told the hospital staff that we were not leaving until it had been verified that the proper medical care had been put in place for me at home. On top of the anger of seeing how poorly I was being treated, he feared losing both me and the baby.
Later that evening, after the home care services had been confirmed and verified, we left the hospital. Imagine our surprise when we discovered that our insurance provider had only authorized one visit per week. After all the anxiety and fear we experienced over the approval of the VNA care, our insurance would now attempt to persuade the home care nursing staff that I did not require their services each week; the same behavior the provider used with the hospital staff.
When we received our first pharmacy care order, IV fluids had not been approved. Instead, our provider would only approve oral medications, which were more expensive for them to provide. Due to the illness, I was unable to sip water, let alone swallow pills. I was baffled that our provider, which knew the diagnosis of my condition and the medical requirement of IV nutrition, would refuse the IV medications that were so critical. Understanding that I would be unable to take the medications prescribed, I did not purchase the prescriptions, opting to save money we were sure would be needed for emergency medical care.
Rather than listening to my concerns, the doctor that our provider assigned, one that had no understanding of HG, assumed I was no longer ill as I had not filled the prescriptions. At that point we knew we needed a high-risk doctor from Loma Linda University Medical Center.
For fifteen days, my dehydration and vomiting worsened until the fluid I was losing exceeded the fluid being taken in. On March 10, 2007, I was admitted to St. Mary’s Hospital and given another IV PICC.
In hindsight I should have been on IV meds from the beginning, but our insurance provider authorized only oral meds, then finally the oral dissolvable meds. Unfortunately they would only authorize eight pills at a time; they would not authorize more until I was hospitalized. This meant that I had to go days at a time without medication because the pharmacy could not order these “special medications” until they received authorization.
I was approved for a generic prescription of the oral dissolvable Zofran, Ondansetron, a drug normally prescribed to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, and surgery. The generics wouldn’t dissolve orally, tasted terrible, and caused a rash over my entire body.
Researching with the pharmacist, we discovered our insurance provider had requested the pharmacy provide a “cheaper” alternative. Due to the physical reactions I was experiencing, I was told to stop taking the medication and they would research an alternative.
For five days, I went without medical care and ended up back in St. Mary’s Hospital. My body was at the breaking point from dehydration and malnutrition so I was given an IV PICC administering TPN (IV fed nutrition). I also had an infection caused by Barstow Community Hospital’s IV lines so I had IV antibiotics assigned. Once again, our insurance provider attempted to prevent the care; Dr. Salwan was blunt with them, advising that I required this care and would receive it.
My diabetes was causing complications and my blood sugar labs were showing over 800. I was informed that I would be seeing a Dr. Brar for my diabetes care as soon as our provider authorized it. Even though my blood sugar reached 1,422, a potentially fatal number, I never met with Dr. Brar during my entire pregnancy as our provider never authorized that care.
The anesthetist who placed the IV PICC TPN line told me that I had to advocate for myself and that I needed to know exactly how to care for the PICC line. She emphasized that due to my blood clotting disorder, it was very important to request bio patches each week from the pharmacy for dressing changes.
I followed her instructions, but my husband had to once again fight with Heritage for this. He even asked about their cost and said, “My wife needs these and she is going to get them even if I have to pay for them myself.”
The home nurse told us we were being picky and that gauze would work just as well. I told her I was doing as I was instructed by the hospital anesthetist. Due to the conflict, I ended up with another infection; again the IV medication was denied. This denial was based on the insurance provider’s in-house physician who had never met me.
I pleaded with our provider for antibiotics to treat the kidney and urinary tract infections I had developed. They coldly stated that they could only tell us what is approved and what is disapproved. I was advised to file a complaint.
Thankfully, after three days without antibiotics, the pharmacist resubmitted the request and sent the antibiotics before the authorization came through. Dr. Wan was dumbfounded that our provider would not authorize the antibiotics and that the re-submission took five days before being approved.
The same weekend, I was prescribed IV Protonix due to severe acid reflux. Once again, our insurance provider would only authorize oral tablets over the prescribed IV medication. After four long painful days, the IV Protonix was finally approved and delivered. At this point, the constant vomiting had a high risk of causing tears and ulcers in my esophagus which would cause bleeding. With my clotting disorder, this type of bleeding could have been fatal.
At this point, less than 15 weeks into my pregnancy, I had suffered through six potentially fatal incidents, and all in the name of our insurance provider saving money.
Eventually, I was approved for care at Loma Linda University Medical Center. We were informed by our insurance that the remainder of my care was going to be “followed closely” by Loma Linda and I experienced a brief respite of relief.
Imagine my disheartened shock when the admittance nurse at Loma Linda informed me that I only had one consultation authorized. I called our provider and informed them of the consultation only authorization and that during the setup for Loma Linda approval, we were told that the authorization was for the remainder of my pregnancy.
Our provider reviewed the account notes and faxed the authorization over so I was able to attend my appointment. This small grace made this very stressful situation bearable, as the drive had already exhausted me, and the friend acting as my chauffeur needed to go back to work. I was so excited that I was finally going to have the care I needed! Or was I? I was doing my best to remain as positive as possible but doing so was not an easy task due to all that had already transpired.
During that first appointment, the OB realized how bad I was: maxed out on medications and still so ill that I could not even swallow my own saliva.
They tried several different treatments and set me up for an ultrasound on June 6th, 2007 with the plan of doing an amniocentesis.
During the ultrasound, they concluded that my baby, Ayden Rae, was perfectly healthy; there was no reason to do the amnio test. The relief I experienced at this delightful news was indescribable. It was as if a great weight had been lifted off of me.
In that same visit, the doctor prescribed Aloxi. Even though my baby was fine, they were concerned about me since my output of fluids was more than my input. There were few medications left for me to try and I was excited to hear that there may finally be something to give me relief. The nurse called my order into the pharmacy right then.
However, on Friday, June 8th, Dr. Wan, the pharmacist, called again and advised our insurance had denied the prescription; I would not be receiving the Aloxi.
With tears of frustrated disbelief, I thanked Dr. Wan for the call. I realized it was too late in the day to call our insurance provider and I would have to wait until the following Monday to deal with this. I had to forgo this potent medication for the weekend even though my doctor said I needed it now! My heart sank. Every time a treatment was denied, there was a delay; with each delay, a worsening of my symptoms and condition.
On Saturday June 9th, 2007 I received a surprise call from Dr. Oshiro. He wanted to see how I was doing and to know how the Aloxi was working for me. I told him the insurance denied the Aloxi. He said, “I am off on Monday; have me paged and I will get you this medication. You need this!”
That Sunday, June 10th, I was feeling worse than what had become my new usual, and I knew something was wrong. Not wanting to scare Perry, I told him I needed to go get checked out.
However, I knew my baby had stopped moving, as I was very connected with her.
When we reached the hospital they started an ultrasound immediately.
The moment the probe was placed on my pregnant belly my life stopped.
My heart stopped beating when I saw my baby’s heart was no longer beating with mine.
I screamed so loud people throughout the hospital heard my cries. For hours and hours, I grieved and made funeral arrangements. Losing my baby Ayden Rae at 23 weeks was devastating.
Since that day we have never been the same.
Our anguish is a palpable thing. We did our very best to get proper care and no one would listen to our concerns.
I tried to protect our baby and she died inside of me. Knowing that I was unable to help her is indescribable with words.
Adding insult to injury, our insurance provider denied coverage for the appointment with Dr. Oshiro to review the report of Ayden Rae’s autopsy. Dr. Oshiro was kind enough to call me and discuss the report by phone, but we were denied the opportunity to discuss the report in the detail that an office visit would have provided.
Reviewing the situation with our insurance provider, I learned their records only show that they officially denied one requested medical service.
Emotions roiled at learning this: anger, frustration, rage. It is impossible to adequately describe the hell that Perry and I went through.
No parent should ever experience leaving the hospital without your baby, to plan a funeral that should have never been. Our baby should have been brought home from birth, healthy and happy. But she wasn’t and I relive the nightmare of her pregnancy daily.
The insurance provider’s denials of medical care and necessary prescriptions for “cost savings,” as well as their lack of understanding about Hyperemesis Gravidarum, even if not legally culpable due to loopholes, directly related to the death of our child.
Under-Educated medical professionals contributed through a lack of knowledge of HG within the medical community.
Imagine the experience of our pregnancy, where I was dehydrated, diabetic, infected, malnourished, and basically dying. Insurance coverage delays caused long waits between the correct medical treatment and, with each delay, my health became worse.
Ultimately, through these delaying tactics, our insurance provider paid more for the care they tried to deny me again and again. Had they just authorized the correct treatment from the beginning, the situation would have been manageable.Sadly, we never experienced this type of treatment denial when I was on Medi-Cal. Strangely the low-income medical insurance provided by the California Department of Health Services offers better care than the medical insurance that we pay out of pocket for; medical insurance that treats us, the customer, as if we don’t matter.
I know my daughter and I did not matter to our provider’s financial bottom line.
I continue to fight with them to this day to receive proper care, even after my baby died through this whole mess. The lack of compassion and understanding, as well as the impact of rehashing this has on my family and our grieving process, is staggering.
When I requested my file from the provider, they refused. I then contacted the home pharmacy care service’s Dr. Wan and requested my file. He said he could not release it to me because our insurance provider informed him he couldn’t release it as it belonged to them. Dr. Wan advised us to request the file from our insurance. As of 2013, we have yet to receive anything from the provider.
This callous treatment, the denial of required medical services, and the lack of education in the medial and insurance community about Hyperemesis Gravidarum is the driving factor behind the founding of the Ayden Rae Foundation and our advocacy for the rights of all HG Mothers and their families.