Dear Medical Professional

Thank you for taking the time to read our thoughts

Dear Medical Professional,

First we would like to extend our deepest appreciation to you for reading these thoughts. This willingness to hear what we have to say is a movement towards reconciliation, between what those of us who have already lost our children may have experienced and what you may have learned in your professional training.

No one ever wants to hear the words, "something is wrong with your baby." Even less welcome are the words, "incompatible with life."  For both the physician who has to deliver the news something has gone terribly wrong and the family who is receiving the news, life will be inexorably altered.

While we are firmly pro-life, and believe every human has intrinsic value and a right to life, we understand many medical professionals are personally pro-choice. 

Abortion can be a sensitive subject, which is why it is so important for you to recognize that by the time a parent has reached the point where diagnostic testing is being done, most people have already decided to continue their pregnancy. For this reason alone it should not be assumed termination is the top choice for families who have received a poor prenatal diagnosis.

Whether they choose to continue with their pregnancy or terminate, the decision is a highly personal one for the family involved- and they alone will have to live with the consequences of either of those choices.

As a physician your attitude can have a profound affect on a family's experience. Unfortunately many medical professionals do not present options in an even-handed way.

Of particular concern, many women who terminate their pregnancies after a diagnosis is given, claim they were rushed into their decision. Older studies show the average amount of time between diagnosis and termination as three days- this is clearly not enough time for families who have just learned their unborn child would be born with a life-limiting illness, to make such a decision with any sort of clarity. As Perinatal Hospice practices become the norm, we hope these time periods will expand so women can make fully informed decisions without feeling pressured.

Many women report not being given the tools that they needed to make an informed decision. Many say continuing their pregnancy was not even presented as an option. They were told they "had" to terminate.

Many regret terminating their pregnancies.

Giving a patient information about continuing their pregnancy is neither a pro-life or pro-choice issue. It's about being a good physician. It's about giving information which will leave your patient on more stable ground at the conclusion of her pregnancy, whether that conclusion comes with a term pregnancy or termination.  It's about giving your patient the power to make a decision to do what is best for her family, and her baby.

When you have presented both options and a family has decided to continue with their pregnancy there are a number of important items to remember when caring for your patient.

First and most importantly- do not let your personal biases cloud your judgement when it comes to treating your patient. For example, we have heard stories of physicians merely going through the motions- as if the patient was wasting their time- during check-ups. Once the decision to continue a pregnancy has been made, please respect that. Ask families how they would like to proceed, because there are a number of different ways to carry to term.

Please try to accommodate reasonable requests. In situations where a lethal defect has been diagnosed, a birth plan is about giving families a sense of power in moments where they feel powerless; about giving them the time and resources they need to commemorate their child's life. It lets a family work out details before baby is born so after birth they can concentrate on loving their baby. These are moments with their child which will never be repeated- what may be out of the ordinary for most families may be of great importance for the family whose child will not live long after birth.

If you feel uncomfortable caring for a family who has decided to carry to term with a poor diagnosis, please offer to transfer care to a colleague who may be more willing to work with them. This is a stressful time for a family- and the world is not supportive of the decision to continue a pregnancy, no matter how many stories of bucket-list babies make it into the news. As the person who will be holding this baby as he/she is born, it is imperative you are able to view this experience with compassion and grace. That you are able to view this baby as a human being who deserves love.

When a family has decided to carry to term there may be some unorthodox requests- and there may be requests which you will have to consider carefully before deciding whether to accommodate them. For example, with certain birth defects the chances of a live birth increase dramatically when a woman chooses to have a C-section. Will you feel comfortable performing surgery if a patient requests it, solely in an effort to allow her to meet her child alive? More importantly, because this will be the more likely response- will you be able to compassionately explain why you won't?

Will you be able to provide your patient with extra monitoring and more frequent appointments, in order to give her more control over her pregnancy? 

Will your office be able to provide your patient with familiar caregivers- nurses and ultrasound technicians who she has met, and who are familiar with her story? Having to explain your baby's condition repeatedly to support staff can be emotionally draining. In addition, members of your staff who may have negative feelings about your patient's decision can be avoided.

Will your office be able to assist your patient in finding physicians who can help her understand her baby's condition more thoroughly- most likely she will want to speak to a neonatologist and/or a pediatric surgeon for a second and even third opinion on her baby's possible survival.

Will your office be able to set families up with the hospital of choice for private tours of the maternity ward and NICU?

Will they be able to help your patient find support groups for parents carrying to term and for parents who have suffered neonatal loss?

Things to remember when speaking to a parent who has chosen to continue their pregnancy; these would most likely apply to a family choosing to terminate their pregnancy as well:

*Do not refer to their baby as a fetus, the products of conception, or it. If they have shared a name call their baby by name- a notation of their chart should help in remembering.

*Do not treat their baby based on diagnosis only. There are obvious precautions that need to be taken when faced with certain disorders, but their baby is not a diagnosis, he/she a human being.

*Do not use their pregnancy as a teaching tool- always ask before bringing other medical professionals into an exam room.

*Show emotion. While professionalism is appreciated- so is an acknowledgement of sadness, and also joy- a cold, clinical physician can be a great detriment to a family in this position.

* If inclined, and if you have evidence that your patient has religious convictions- pray with them. This should only be done after the patient has volunteered information about their religious convictions- which they usually will in this scenario.

* Deliver information kindly. Again- cold and clinical can be difficult for a family when faced with this situation.

* Do not offer quality of life information unless asked. Limb Body Wall Complex is a generally lethal disorder- there is no need to make an already bleak situation worse with unnecessary information. It can also be insulting to some parents who would accept their baby even if the baby was living with profound disabilities.

*Give your patients time to process and internalize information. Make sure that information is current and thorough (see above for a possible, emotional exception). Be ready to answer questions, no matter how strange they may be. Your patience may be the only thing that is holding a family together at a very difficult time. You can choose whether to be a lifeline or an anchor.

* Lastly- let your patients have hope. They are going to have it anyways. You can not crush hope with facts, because hope is about believing in the impossible, the improbable, and everything in between.

Thank you so much for taking the time to listen to our thoughts. We appreciate your patience and hope that you read with the understanding that we are writing our notes here from experiences that we have had, and with hope that our perspective will make someone else's experience a better one.

Please contact us via email at info@limbbodywallcomplex.net if you have a patient who has had a baby diagnosed with LBWC or Body Stalk Anomaly, We would be happy to offer them emotional support for the duration of their pregnancy. We do not claim to be a medical website- we just hope to hold the hands of every parent who comes to us in need of being held.

Sincerely,

Parents of these very special babies