Congenital Anomalies

Mamas on Bedrest: “Out of Pocket” But In The Best Hands

March 25th, 2013

Hello Mamas,

Last post I shared with you the story of Mama H who is having some pregnancy complications and really needing some answers. So far, she has had to change OB’s and is waiting for her current OB to gather enough information to not only give her a diagnosis, but also a prognosis for whether or not her pregnancy will progress to a healthy child.

I have since heard back from Mama H and learned that she is being treated by one of the best OB’s in her town in India (India, we are getting around!!). As would be expected she is extremely anxious and wanting to know if her baby will survive (If you’ll recall, she lost the child she was carrying a year ago.).

In our last post I reminded Mamas on Bedrest not to be shy about getting a second opinion if their questions and concerns are not being met to their satisfaction. I still hold to this recommendation because I believe that having as much information as possible when making potentially life changing decisions is critical. I am also a strong proponent of not letting money be a deciding factor. Here’s why.

Being that you are on bed rest, it’s safe to assume there is a suspected complication with your pregnancy. You need to see a specialist, but the specialist recommended is $300 and not on your insurance plan. Do you pay out of pocket or wing it? Let’s look at the possible outcomes.

1) You hem and haw, but decide to shell out the cash for the peace of mind. You meet with the specialist and while your condition is abnormal, it does not warrant any major treatment or intervention other than bed rest. You go on to have an uneventful bed rest pregnancy, deliver your baby at 39 weeks (after spontaneous initiation of labor) and have a healthy baby.

Compare this scenario to what could have happened.

2) Mama A is going along in her pregnancy and at what was to be a routine 2nd trimester prenatal visit, her OB recognizes something abnormal. She recommends a Level  II ultrasound. She refers Mama A to a special radiology clinic that does the ultrasound but neither the Maternal Fetal Medicine specialist in charge of the center nor the ultra sound is covered by insurance. When all is said and done, this entire visit will be nearly $750. Convinced She can’t possibly afford the procedure and really “liking” her OB, Mama A decides to stick with her and trust that she will attend to all her needs with no complications.

Mama A goes into labor at 32 weeks. When she gives birth to her son, he is noted to have a loud heart murmur consistent with a hole in his heart that requires major medical attention. The neonatologist who attends the birth mentions that had this abnormality been detected during the pregnancy at the Level II ultrasound, Mama A would have been started on  prescription medication and the heart defect would likely have closed itself. Mama A’s little boy is treated and does go on to lead a healthy normal life. But Mama A’s little boy spent several weeks in the NICU and by the time he went home, Mama A’s family was some $500,000 in debt.*

If Mama A had had the Level 2 Ultrasound and taken medication she may have spent a total of $1000. Now I am not saying that this is a trivial amount of money. But I am relatively sure that Mama A could have weathered $1000 far better than $500,000.

Sometimes the best answer to a situation is not the easiest, most obvious or most inexpensive answer. Sometimes that best answer at the time really hurts and blows your budget to bits. But it has been my experience that to be a “out of pocket to be in the best hands” has always served me well. Everyone has to make their own decisions and I am in no way trivializing expenses (I know debt intimately!!!), but I am suggesting that we all look beyond the monetary for the true value for which we seek.

 

*This is a totally fictitious scenario and Mama A is a totally fictitious mama!!!

Mamas on Bedrest: Common Sense Isn’t Very Common

September 24th, 2012

My dear friend Renee has a saying that is so apt, “Common sense isn’t very common”.

The first time she said this, we both busted out in laughter and shook our heads at whatever crazy occurrence had just transpired. Since that time, I have said to myself time and time again regarding various occurrences, “Common sense isn’t very common.”

But when I see the lack of common sense in medicine and science it really gives me pause. I recently got a MedScape alert in my e-mail inbox entitled, “Prenatal Diagnosis: What About the Mother?”, and it was a short video commentary by Jack Rychik, MD, Director of the Fetal Heart Program at the Cardiac Center of the Children’s Hospital of Philadelphia. Dr. Rychik was explaining how medicine has progressed to where we can now make diagnoses of congenital heart abnormalities in fetuses as early as 14-16 weeks.  In his video he states,

“Making the diagnosis of congenital heart disease before birth provides multiple benefits. We can offer education to families. We can, most importantly, make a plan. When these babies come to term and they are ready for delivery, medication, care, and management can be offered to optimize the overall outcome for these patients.”

Dr. Rychik goes on to say.

“What we have appreciated of late is that, by offering these fetal echocardiography services and making a diagnosis [of congenital heart disease], we create a potential for maternal stress. In essence, these are mothers who have been given this diagnosis in their fetus but then there are months that elapse before actual management takes place. This is a period of time with potential for significant stress.”

At the risk of seeming snide, can we all give a collective, “Duh!” How can one not realize that if you tell a mother that there is something wrong with her child, she is going to be upset? How can one not realize that if you tell a pregnant mama that there is something wrong (and as serious as a congenital heart abnormality) with her unborn child, that she’s going to be upset? When I read his statement, “we have appreciated of late…” Really?? You’re just getting this?? Once again, common sense isn’t very common.

I am as appreciative as the next person of the advances that have been made in science and technology that enable advances in diagnosis and treatment in medicine. But I am even more concerned that medicine and science have forgotten that for all their ease of knowledge and function, technology and science are being used on and for people. Medicine and science are not just fascinating and interesting disciplines. At their core, and I am speaking specifically about medicine here, they are about improving the human condition. Medicine is (or should be) about making people feel better, easing their pain and restoring them to a state of good health. This should always be the guiding principle whether we are talking about improving the lifestyle of a diabetic, improving mobility and function in a paraplegic or making an early diagnosis and treatment plan for a pregnant mama and her unborn baby. To forget the human element in favor of medical science is a travesty. We cannot lose the human element to medicine.

When I first started Mamas on Bedrest & Beyond, I was (and continue to be) adamant that the focus be on mamas. So often with obstetrics and pregnancy the focus shifts to the baby and mamas seem to be relegated to ‘gestational carriers’. While I don’t believe that any obstetrician or women’s health care provider ever intends for this to happen, many mamas begin to feel secondary within their pregnancies and this becomes even more pronounced when the pregnancy becomes high risk.

The goal with Mamas on Bedrest & Beyond has always been to be a support and resource for mamas. For mamas locally, that can mean home visits to perform personal care services such as grocery shopping, running errands, light housekeeping, etc… For mamas online, that means support via answering questions, social interaction, workshops and webinars and teleseminars.  Having had 2 high risk pregnancies, I know what it feels like to be spoken of in the third person or to have the baby and pregnancy made tantamount with you feeling as if you’re “just there”. We know that you are doing the absolute best that you can and our goal is to provide as many tools and resources as possible so that you can continue your pregnancy as far along as possible.