Perfection is not a polished thing

“Perfection is not a polished thing. It is often simply something that is sincerely meant. Perfection is a job complete, praise given, a prayer heard, it can be kindness shown, thanks offered up. Perfection is what we discover in each other–what we see reflected back….And if perfection alludes us –that doesn’t matter for what we have within the moment is enough.”

CalltheMidwife_DownsSyndrome_2

 

I often feel teary eyed when I finish watching Call the Midwife. I am so struck by the experiences and feelings that are in unison with our on screen characters. Each episode is so poignant and I feel that I am re-experiencing so many similar situations from within the span of my own career. Midwife means “with woman” and that journey entails intensity, compassion, meeting someone where they are on their personal path towards motherhood with open communication that values others’ thoughts and ideas. There are amazing ups and some serious moments of sadness. Women and families can have many challenges and you must show respect for individuals with their inherent strengths and their vulnerabilities.

In episode 5 we got to celebrate Sister Evangelina’s jubilee celebration and remember that she comes with her own context of family! We missed Jenny as she took needed peace and comfort at the Mother House to grieve and to be restored. Sister Julienne experienced the toll of constant pressure and stress and her collapse showed the intense level of commitments that the nuns, nurses, and midwives work under. Shelagh and Chummy step up to help fill the gap of leadership and manpower. Patsy arrives and jumps right in with a sense of humor and seems so competent and confident and I instantly liked her. My misty eyes came from the story line of Sally and Jacob and it made me think back on a birth I attended many years ago.

I blink my eyes and I can see myself in the room again, the angle of the bed within the 4 walls, and I can even remember the amount of light streaming into the room through the venetian blinds. I am sitting on the edge of the bed, the mum is pushing and the baby warmer is waiting for our new arrival. It has been an uneventful labor and she has begun to push. I suddenly have this intense feeling of uneasiness. I try to think of reasons these feelings could be arising….there are no red flags, no high risk factors, things have gone smoothly. I try to ignore the feeling but it won’t go away. This is the only time in my career that I have done this….but…. I proceed to leave the room and go to consult with the attending physician – without any apparent reason. I ask if he would mind coming into the room to “stand by” in case I need him. I give him a recap of her history and labor progress and apologize as I tell him that the reason for this request is difficult to explain….I just have an odd feeling. He asks if I think the patient is going to hemorrhage, have a shoulder dystocia, and a series of other queries—and again I apologize—it is just a feeling. He comes in but within a few minutes becomes impatient and requests to be called when the birth is more imminent. Within a few minutes we can see more of the baby’s head and ask for his return. He briskly enters and asks for the bed to be broken down (meaning to remove the end of the bed and to put the woman in stirrups — this is a position that as a midwife I just do not use) along with a request to perform an episiotomy (cutting the vaginal opening to make it larger). She did not need an episiotomy but I felt extreme pressure and since I had asked for his help-I suddenly felt less powerful. The baby emerges without any problems the doctor says everything seems fine and quickly exits.

I immediately give the baby to the mother and lean on the edge of the bed as I wait for the placenta to separate. The minute I cut the cord the nurse scoops the baby up and goes to the warmer so that she can do her examination and paper work. While I am waiting for the suture material to repair the episiotomy I examine the placenta and the umbilical cord for normalcy. The room is buzzing with laughter, joy and excitement with our new arrival. I look at the cord and I note that there are only two vessels instead of three and feel uneasy. I walk slowly and silently over to the warmer to examine the baby myself—and note that the baby has features typically noted with a Down syndrome diagnosis. I go back to the bedside to repair the episiotomy as a million thoughts run through my head. I can hear, as if in the distance, the joyful noise of the room. Internally I struggle with how I will approach this conversation that will forever change the trajectory of this family. I realized that this information needed to be given in a sensitive manner because what we said and how we said it would have a life time impact on the health and well-being of both the parents and this child. I think of it like a flash bulb moment—those specific moments you remember for the rest of your life and I did not feel fully prepared for this discussion.
I ask for assistance from the medical genetics counselor. They explained to the parents that it is normal to be nervous about what lies ahead, but remember that Down syndrome is a condition your baby has, it is not who your baby is. I can still hear the mother repeatedly asking “but everything will be ok….right?”

The website called Unexpected: Stories of a Down Syndrome Diagnosis is a wonderful site that explores those first difficult days. The stories recount the initial accounts of emotions and they are eerily similar.

For any readers that are interested in knowing more about Downs Syndrome there are references and resources at the end of the blog. March of Dimes is a wonderful site to explore for many topic areas and I did revisit their site while researching Down syndrome for this blog entry. About 120,000 babies born each year have a birth defect with Down syndrome being one of the most common genetic birth defects. Each year in the USA approximately 1 in 700 (or 6,000) babies are born with Down syndrome. According to the National Down Syndrome Society, there are more than 400,000 individuals with Down syndrome in the United States (National Down Syndrome Society). Down syndrome is caused by extra genetic material from chromosome 21. It is rare for a male with Down syndrome to reproduce and a woman with Down syndrome has a 50-50 chance of conceiving a child with Down syndrome, but many affected fetuses are miscarried (American Academy of Pediatrics, 2007).

A person can live to approximately 60 years with Down syndrome and most of the health conditions associated with Down syndrome can be treated. Some individuals with Down syndrome may have a number of health issues and others may have none while the seriousness of certain conditions can be varied. Some of the health issues can include heart defects, intestinal defects, vision problems, hearing loss, an increase in infections, thyroid problems, leukemia, and memory loss (March of Dimes, accessed 4/27/2014).

The National Down Syndrome Congress (NDSC) is a fabulous organization and their purpose is to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. They provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome. They have a vision of a world with equal rights and opportunities for people with Down syndrome—and our episode explored some of the lack of rights during the late 1950s. One area that I am passionate about is the need for an improvement in informed consent and disclosure of information regarding prenatal screening and diagnostic testing for all women along with the education and support for individuals with a positive screen or diagnosis for Down syndrome.

A website that I found helpful was {Unexpected} stories of a Down syndrome diagnosis, as told by families from around the world (http://www.missiont21.com/ , accessed 4/28/2014). I recommend going to the website and reading some of the family’s stories.

DownSyndrome

The show made me reflect that as a midwife we are witness to a life altering event but I can attest to the fact that in the process we are forever changed as well.

 

 

 

 

References and Resources:

American Academy of Pediatrics Committee on Genetics. Health Supervision for Children with Down syndrome. Pediatrics, volume 107, number 2, February 2001, pages 442-449 (reaffirmed 9/1/07).

Down syndrome Pregnancy http://downsyndromepregnancy.org/ accessed 4/27/2014

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives, edited by Kathryn Lynard Soper: collection of personal stories many of which address prenatal diagnosis. (http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-85-0_A_.asp)

March of Dimes http://www.marchofdimes.com/baby/down-syndrome.aspx# Accessed 4/27/2014

National Down syndrome Society http://www.ndss.org/   accessed 4/27/2014                                                                                                              666 Broadway New York, NY 10012 (800) 221-4602

National Down syndrome Congress http://www.ndsccenter.org/ accessed 4/27/2014                                                                                               1370 Center Drive, Suite 102 Atlanta, GA 30338 (800) 232-NDSC (6372)

Unexpected: Stories of a Down syndrome Diagnosis http://www.missiont21.com/#!birth/c1n7p   http://media.wix.com/ugd/1e07d1_a9c61103a38b413289e4905c1a8936ec.pdf

World Down Syndrome Day March 21st http://www.worlddownsyndromeday.org/

Resources for Health Care Providers

Lettercase.org: bi-fold brochure for medical providers with a synopsis of research and studies about how best to deliver a prenatal diagnosis. (http://www.lettercase.org/)

Brighter Tomorrows: virtual interactive tutorial for medical care providers on how to deliver a diagnosis, featuring various scenarios. There is also a refresher version for those who revisit the site. (http://www.brighter-tomorrows.org/)

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2 thoughts on “Perfection is not a polished thing

  1. Katie, What a touching birth story. Isnt it interesting when intuition kicks in. I too had an experience with the birth an unexpected Down’s baby which changed me. Thanks so much for providing such useful resources. Your blog entries are so informative.

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