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.

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The Story of Theo and the 4 Princesses

BABY_C2

As I lay on the ultrasound table this afternoon I watched the story of Theo and the four princesses unfold.The sonographers took just over 30 minutes on each baby to specifically measure and examine:

  • The spine
  • The heart, including all 4 chambers, the aortic arch and the heart rate
  • The brain and specific parts including the cerebellum
  • Nuchal fold
  • Kidneys and the blood flow through the renal arteries
  • The umbilical cord and placenta
  • Fluid within each placenta
  • Boy and Girl parts
  • Head circumference
  • Facial features (eyes, nose, lips)
  • Both arms with open hands
  • Both legs and feet

As you can see it was truly a marathon of measurements. But, three hours later we now know that we have very healthy babies. Everyone’s organs look great at this point and have great blood flow. All of the nuchal folds were less than 6 mm, which means they are all at a very low risk for genetic disorders, including downs syndrome. Everyone has 10 fingers and 10 toes and the cutest little noses!  Also, all of the babies’ measurements are within normal limits. We have two babies at the 70th percentile, meaning they are measuring bigger than one baby would at this time. The remaining three babies are at the 30th percentile.

We also got confirmation that we will be having four girls and one little boy. We have decided to name our little guy Theodore Joseph, or Theo for short. He may eventually come to enjoy the name TJ, too!  As for our little ladies, we are still tossing names around but definitely have a few that we like.

I commend all of the sonographers for their work because we certainly have a bunch of wiggle worms. However, everyone did give us a beautiful profile shot and a quick glance at their faces.

Baby D

Baby D

Baby E

Baby E

Even little Theo decided to show us his face, which up until this point he would only reveal his boy parts.

BABY A

The only baby who stayed in the same position was baby E, who is at the very top. She may be quite the diver some day because she assumed the Pike position and didn’t switch. Baby C was tucked in a little ball and was quite the rascal. The rest were rolling about the entire time. I was happy to see everyone moving and grooving.  I wish I could share all of the images from today with you but unfortunately I got a faulty disc. All of the images within this post are from our 19-week ultrasound.

So, all in all we are doing very well! We are quickly approaching 22 weeks this Friday and then it’s just 3 more months to make it to our goal of 34 weeks!

Greetings from Arizona

Superstition Mountain

All is well in Arizona!

21 weeks

Today we celebrate 21 weeks, which may have not been possible without this venture to the desert.

My mom came to visit this week and it has been amazing to have her here. She has cleaned, cooked, and cleaned some more. It will be hard to say goodbye tomorrow, but I just have to remember that it’s really, see you later.

The home where I am staying is truly an oasis with a beautiful view from the patio.  Since there is not much to share in terms of updates, I thought I would share the scenery.

One tall cactus

One tall cactus

Cactus in front of Superstition Mountain

Cactus in front of Superstition Mountain

There is a lot more wildlife than I thought there would be. The birds are constantly chirping. I am greeted each morning by a pair of lovely doves. I even found a family of quail- mommy, daddy and several babies.  After meeting those little guys I was happy to see the vulture fly away. There are also the little lizards scampering to and fro and the coyote who takes his walk of shame down the road every morn.  I am truly surrounded by God’s handiwork, which is yet another blessing.

Mr. Morning Dove

Mr. Morning Dove

We will be having our 5-hour, 2nd trimester scan next week- woo hoo! I hear it’s a marathon with snack breaks and all! So, I will definintely have more to share about the V-5 next week. Stay tuned!