The Cost of Good Care

American-flag-stethascope

The healthcare industry is constantly evolving. Scientific research spurs on new discoveries, techniques, surgeries and cures. The economic environment dictates the distribution of healthcare. In the present day and age, there are many “what-if’s” about how and to whom healthcare is delivered. This post is not intended to be an epic dissertation on healthcare in America. The purpose, rather, is to explain to those inquiring why we are no longer pursuing medical care for our pregnancy in Madison, WI.

Upon learning that we were pregnant with quintuplets, the initial meetings with our fertility specialist and perinatologists were an emotional undertaking, to say the least. These medical specialists fought long and hard to convince us to pursue multi-fetal reduction. They wanted us to take the five and reduce to 2, maybe 3. This was never an option for us, and we made it very clear from day one. However, despite our stance, the perinatologists would not discuss a plan of care with us for over a month under their supervision.

Finally, nearly two months into our pregnancy we were able to sit down and discuss how we were going to make our pregnancy a success and give our unborn children the best chance at a happy and healthy life. We came prepared to this meeting, well read on terms and proactive treatments and even brought along a few research articles to discuss. The docs may have been a bit thrown off; one was not even prepared to discuss how to combat pre-term labor. Luckily, his colleague was.

We had a long conversation about what their practice was willing to provide and what they were not. They were willing to provide monitoring prior to 24 weeks of gestation, which simply meant monthly ultrasounds. They were willing to provide a nutrition consult with their dietitian and psychological care with their social worker. But, they were not willing to consider preventative measures, and what I would consider proactive care. Despite the research I held in my hand, they would not acknowledge the efficacy of a cerclage (stitching of the cervix), non-stress testing (contraction monitoring), intensive tocolysis (treatment of contractions to delay labor), or even bed-rest. Instead they encouraged me to continue to take my prenatal vitamin and told me it was fine to exercise up to 30 minutes a day.

This information did not sit well with me, so I reached out to other mothers of quints and they were appalled. They encouraged us to get a second opinion and quickly. I didn’t at that point. I decided that I needed to come to trust my current healthcare practitioners; I did not want to seek care elsewhere knowing: 1) This would mean leaving home and 2) Our insurance would not cover it.

Then, at 18 weeks we sat across the table from another perinatologist from the same practice and a clinical nurse specialist. They informed us that we would most likely lose this pregnancy in the next 3-4 weeks. I asked and begged for them to reconsider a cerclage, and they said it would not help but would actually put me in more danger of losing my pregnancy. They shared that cerclages are only provided to persons with incompetent cervixes, which is a diagnosis typically given to moms only after having a previous miscarriage prior to 24 weeks. He told us not to give up hope but that there was essentially nothing else we could do. He encouraged me to continue to eat right and said I could still exercise up to 30 minutes daily. I asked about bed rest, tocolytic drugs and contraction monitoring and was once again told these treatment options would be of no help. Then, came the moment I realized that care at this clinic was not our only choice. I sought a second opinion.

The second opinion came from a renowned high-risk perinatologist in Arizona, who many other quint mom’s highly recommended and adored. They loved him for a very important reason; he saved their pregnancies. After a 30-minute phone call with this doc, also known as the, “Quad God,” I learned that if I didn’t have a cerclage within the next 3 days, we would, in all likelihood, lose our babies. He had a recipe for success that was incomparable to other docs’ practices due to his extensive experience with high order multiples. He has delivered 101 sets of quadruplets, 15 sets of quintuplets and 2 sets of sextuplets. To put that in perspective, our previous docs had delivered just 1 set of quads, no quints, and no sextuplets. Additionally, the average gestational age of quints delivered under his care is 33 weeks and 1 day… Academic research indicates the total population gestational average is somewhere between 25 and 27 weeks. The “Quad God’s” success was quite simply unheard of.

The next few days flew by as we attempted to plead with our insurance company to cover this care. However, to this day, they continue to deny us because:

  1. The services requested are/were with a non-participating provider.
  2.  The services are/were not medically indicated because they are not appropriate to treat the condition and do not represent the standard of care to treat the condition.
  3.  The utility of prophylactic cerclage is unproven and there is evidence to suggest it may be detrimental and may be associated with an increase in preterm delivery and pregnancy loss.

However, here I sit to write this post at 24 weeks- 6 weeks later- with healthy babies developing within me.

So, many ask why am I still here? I have the cerclage, the pregnancy is stable and insurance continues to not be willing to pay a dime towards our care. Why would I not come back to Madison?

The answer to me is plain and simple:

1. There were no other participating providers in our insurance network besides our  initial maternal and fetal medicine specialists.

We were concerned with the care that was being provided by our previous providers for several reasons, including their unwillingness to consider preventative and proactive measures of care.  Even after the cerclage, they informed me that they would be unwilling to provide intense tocolysis, contraction monitoring and support strict bed rest. I have been receiving these treatments here in AZ since the moment I arrived.

2. Emergent care, via cerclage, strict bed rest, contraction monitoring and tocolysis, were/are all required and medically indicated, in order to, prevent pre-term labor.

There is a body of research, which supports these facets of care during multi-fetal gestation. Additionally, a cerclage is not an “experimental therapy” but again is considered a component of normal perinatal care in a high-order multiples pregnancy.

My current perinatologist has published over 25 peer-reviewed articles on the management of high-order multiples and has delivered 15 sets of quintuplets whom have exceeded the average gestational age by over 5 weeks. The previous specialists have never delivered, or managed, a quintuplet pregnancy and while they are revered clinicians in their areas of research, they have not published on the management of high-order multiple pregnancies.

The peace that I feel in pursuing treatment under this new doctor’s care is overwhelming. For the first time in this pregnancy, I am confident in the care that I am receiving.  I would fear for the well being of my babies if they were subject to the care of the practitioners in Madison. They have not demonstrated that they truly care about our five miracles, nor do they appear willing to proactively fight for a healthy pregnancy.

Unfortunately, these reasons are not convincing to our insurance provider. Therefore, we will continue to appeal and grieve this process with them, as we have since we initiated care outside of network. It is truly unfortunate that we cannot find comparable care within our insurance providers network. Our current doctor even offered to communicate his care plan to our previous docs, so that we could remain in-network, however they have denied all collaboration at this point.

Our biggest concern at this point, outside the healthy delivery of our 5 babies, is the financial livelihood of our family. The medical practitioners we are working with are very cognoscente of our financial situation and have been more than accommodating. But, we know that once I am admitted for closer monitoring and more intense treatment, the bills will begin to accumulate. Then, of course, will come the likely astronomical Neonatal Intensive Care Unit bill for 5 babies.

And so, we are witness to the cost of good healthcare in America. Still, we are simply unwilling to sacrifice our right to choose a qualified practitioner just because an insurance company is holding us financially hostage. We feel as parents-to-be that we now represent our children; we are now responsible for their well being until they are able to take on that responsibility themselves. We will fight, and continue to fight, for our children’s God given right to life, liberty, and the pursuit of happiness.

Visit to the High Risk Clinic

Keep Calm and Choose Life

It has taken me over a week to process our first visit to the perinatal high-risk clinic. Frank and I went into the visit excited and prepared to askour long list of questions about how we can make this pregnancy the most successful it can be. We anticipated a thorough discussion on treatments, tests and procedures as well as detailed instructions for each trimester. Much to our dismay, this is not what occurred.

The visit started off wonderfully. We had our second ultrasound and had the opportunity to see all five of our blessings at appropriate lengths and with strong heartbeats. The ultrasound tech was amazing! She walked us through everything we were looking at for each of the fetuses. It was breath taking!

Frank and I were so encouraged after the ultrasound that we decided to launch our announcement and once again we were overwhelmed by the love and support from everyone! We don’t have words to describe how thankful we are!

We then headed over to the consultation room to meet our maternal and fetal medicine specialist and his fellow. Even within the first few minutes I sensed tension that you could have cut with a knife. The doctor also did not congratulate us, but hopped right into reviewing my medical history and highlighted each condition that put this pregnancy at risk. Then, he decided to transition to the stat list and read the probabilities for each of the chronic and acute disabilities and conditions. I made it halfway through the list and burst into tears. The fellow kindly stopped and was very apologetic. He just kept saying, “Oh no, Oh no… I’m so sorry.” I sensed his compassion at this point, but unfortunately the floodgates had already opened. The specialist quickly took over and the fellow excused himself; I’m fairly certain he went out into the hallway to cry because he came back with tear-stained cheeks.

I knew where this conversation was going. Our perinatologist then walked us through additional studies on the risks of quintuplets and the benefits of multi-fetal reduction. I must admit his approach was much softer than our first doc, but it was clear he was on a mission. He told us that there was a chance that all five of our children could be born with cerebral palsy. This really hit home; would I be able to mother 5 children with several disabilities? My immediate answer was yes, if that’s what I was called to do.

He also shared several studies that highlighted the importance of gestational age and birth weight. There is no doubt that I comprehend the risks we are facing of CP, compromised lung function, IVH, blindness, deafness and the list goes on and on. But, as a mother-to-be I cannot help but be optimistic and fight for these little ones. I have catalogued the research articles that were shared by the docs below, and would love others’ opinions. But, I have also found countless studies that demonstrate that medical technology today provides strategies to prolong gestation and decrease the risk of neurological abnormalities and respiratory complications.  If any others have additional research studies that have been pivotal to their care, please do not hesitate to share.  My hope now hinges on the fact that I could make it past 32 weeks. For quints, this would resemble a birth at 28 weeks, which continues to pose a risk, but according to the articles the risks tremendously decrease for (Condition, probability):

If we can make it to 34 weeks, the probabilities of RDS decreases to 55%, IVH to 2%, Sepsis to 11% and NEC to 15%.  So, our Doom and Gloom conversation, part II, finished up on a very sad note. Frank and I drove home in a haze of what if’s, statistics, and desperately sought some good news. Our next visit back to this clinic is not until our 2nd trimester, or one month. Until then, we continue to take one day at a time doing all that we can to prepare mentally, physically, emotionally, spiritually and of course financially to parent five beautiful babies.

Research Articles:

Multiple Gestation associated with infertility therapy: an American Society for reproductive medicine practice committee opinion

Contemporary outcomes with the latest 1000 cases of multifetal pregnancy reduction (MPR)

Estimation of neonatal outcome and perinatal therapy use

Long-term Medical and Social Consequences of Preterm Birth

Long-term family outcomes for children with very low birth weights

Multi-fetal Pregnancy Reduction, Committee on Ethics

Management of High-Order Multiple Gestation

High-Order Multiple Gestations

The Case Against Multi-Fetal Reduction

Determinants of Gestational Weight Gain

Outcomes in Young Adulthood for Very-Low-Birth-Weight Infants

Written by: Cassie Vanderwall