Featured Fridays: St. Joseph's Perinatal Comfort Care Program

Featured Fridays: St. Joseph's Perinatal Comfort Care Program

As I vacillated with whether or not I wanted to do a Book Advent (but we have SO many books and our house is cluttered), or what I could do to countdown Macy's birthday this year, I also was reviewing the Special Delivery website before my sister transferred all the files for good to our new site.  Of course, reading through my journey and the memorial tributes made me think about all the great non-profit organizations out there, many of which helped to support us on our journey with Macy. 

It was a light bulb moment.  I could feature a non-profit organization every Friday for the nine Fridays leading up to what would have been Macy's ninth birthday.  There are many organizations that I want to donate my money to, especially at this time of year, so I thought I'd highlight some of my favorites as I donate to them while also honoring Macy's legacy.

St. Joseph Perinatal Comfort Care Program

I left the hospital with an empty heart.  Not a broken one, not just empty arms,  but an EMPTY HEART. 

After months of preparation--and yes, every pregnancy is months of preparation, but my second one moreso than the others--I had done what I sought out to do: I met my baby girl before I had to say goodbye.

And even though I'm a physician, and even though I did my residency at the hospital across the street and had been at the very same c-section room as a physician too many times to count, I needed all the help I could get in figuring out what was going on with my baby. (My residency was done at CHOC Children's and the adult hospital across the street is St. Joseph's Hospital.)

Let me explain: I didn't know the logistics of what it would be like to give birth to a baby who may or may not survive the birthing process.  Enter the St. Joseph's Perinatal Comfort Care Program.  At the time (2008), it was a fairly new program--in fact as a second year resident several years prior, I was rotating through the NICU when a baby with trisomy 18 was born.  She had some other underlying medical conditions that were uncertain when she was in her mother's womb.  So she was brought over to the NICU while her Mom was still at St. Joseph's.    I thought that this was how things would be with Macy, that I would be separated from her.  And, yes, I remember the details of that particular baby very well.  But out of respect for that family's privacy, I'll refrain from writing what I remember....only that their experience helped me so much with the pregnancy/birth of Macy, in more ways than one.

We met with Suzanne Engelder, the perinatal comfort care program coordinator, and she helped me and my husband every step of the way.

Without looking back at my Caring Bridge journal from that time, I'll tell you what I remember:

  • that the rules had changed since I witnessed the journey of that baby with t18 when I was a resident
  • that I would have my baby WITH me after her birth
  • that the PCC program was created with the intention of supporting the family in as many ways as possible
  • that specially-trained staff would be personally taking care of us when Macy was born
  • that I could hold Macy for as long as I liked
  • that I could make memories with Macy (and Mini Me) before she was even born. Some of these happy memories included music and the wonderful music therapist who came to our home

Here's the thing I remember most: that we were treated with so much respect and love.

There are so many things I could write about the amazing team at St. Joseph's Perinatal Comfort Care program.  Most of all that I'm so grateful to have had them during our journey with Macy.  And though I wouldn't wish this loss on anyone, for those who are currently going through a difficult pregnancy or an unforeseen loss, I wish them the best care possible.  Which is why I'm featuring the PCC program at St. Joseph's as our first nonprofit for Featured Fridays. 

For more information about the Perinatal Comfort Care Program, please click here.  To donate to the program to support families like mine, please click here and indicate 'PCC' as your designation. To donate bears for grieving mothers to go home with 'full' arms, click here.

The featured photo above was taken the day before Macy was born.  I was 37 weeks pregnant but due to her Trisomy 18 and Congenital Diaphragmatic Hernia, I was carrying 7 1/2 liters of amniotic fluid.  The picture is not altered in any way except to crop it.  I like that I'm smiling in the picture as we marked her growth.



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