Sunday Synopsis

Changing early pregnancy etiquette– I like this article because it keeps on the theme I”m seeing more and more of in mainstream media- let’s talk about our losses!  espeically miscarriage- the hush hush secret.

THe healing power of animals.  This is like my story, sort of.  We got our puppy six months after Mabel died.  I needed something to love and mother.  It’s not a save-all.  Getting my puppy doesnt undo the grief of burying my child, but I found comfort in it.  Do you have an animal in your life that has helped you in your grief?

I hope that you never know.  I love this article for addressing the grief olympics that sometimes comes in the bereaved world.  I also love that it says “be there…even when you are pushed away.” to those who want to support us.  I can’t say how important this one line is to me.

Couples who chose not to have children are selfish, Pope says. Not to bring in any debate about religion, but any thoughts on this?  I think of couples who lost babies to due multiple miscarriages, due to life limiting conditions, due to stillbirth, due to reasonless reasons.  What if they choose not to go through the pain of another pregnancy?  What of the couples who struggle with infertility?  There just feels likes there’s too much behind being childless for people (religious heads or not) to judge.

She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

Is Mabel a real person?

“Is Mabel a real person?” the woman behind the counter asked. I had called a week before to order a custom cake. I picked out a decadent flavor and frosting combo. The only things I said was that I wanted it to say “Happy Birthday, Mabel” and for it to have carrot decorations on it.

When this woman, who I could tell was the decorator, asked if she was real, I was yet again taken aback about how to answer.

“She was,” I answered quickly with a half smile.

In the car, I relayed this exchange to Chris. A strange question, we decided. I must have said something when ordering that was a little out of the usual. Perhaps they thought I was ordering a cake for a rabbit?

“I wish I had answered differently,” I told him. “I wish I had said, “Yes, Mabel’s my daughter.” But instead I said what I said, leaving them thinking that Mabel was some 85 year-old grandmother who passed away, and isn’t it sweet that we still remember.

There’s a first time for every question. Right now I can answer “how’s the baby?” and “Do you have kids” very easily, with responses that leave me satisfied. In the beginning these questions would cause my heart to race, my face to get hot and tears to well and I’d stumble over an inadequate answer. With time I learned the replies to such inquiries that left me feeling true to my daughter. If I’m ever asked again, that strange, hear-swirling question “Is Mabel a real person?” I’ll be better prepared.

The question did come at an interesting time. It’s been a full year since she was a “real” person. Sometimes I wonder, did it all really happen? Was she really here? Here I am, 21 months out from that positive pregnancy test, eight full months of pregnancy later- the discomforts, the kicks, the ultrasounds that proved there was really a baby and yet, no gurgling baby to show for it all. It feels so unreal. My life in many ways is the same- go to work, come home, care for just myself and Chris. There are many ways I remind myself that things are different- the work changes (still not attending births), the photos that line my house of a child I once held, the stretch marks on my breasts- but I am still thrown a bit when asked “Do you have kids?” Because even though I know I am a mom in a sense, I know I had a daughter, I still feel a bit like an imposter, like I made the whole thing up.

Do you ever feel that way?

Sunday Synopsis

Brides are now donating their wedding gowns to an amazing cause–  At the end of my pregnancy, I remember looking online for a baby burial outfit- just in case.  Not much out there.  The closest I could find were christening outfits- but they were gender specific and we didn’t know if we were having a boy or a girl.  I also worried they would be far too big for the small baby I was expecting.  I eventually stumbled across the perfect outfit which came just in time before we had to bury our little one.  It’s hard enough to have to even consider buying a burial outfit that small, so it’s heartwarming to hear that some people are trying to make that terribly sad and taboo task a bit easier.

NILMDTS photographers camera stolen-  Remember this?  Camera card returned to the news station!  expensive camera equipment weren’t but the memories were so gratefully returned to the bereaved parents.  there’s even a fund started to help replace the photographers equipment.

These photos show what women really look like after pregnancy  *TRIGGER WARNING* this has moms with babies in it.  I post it because I still get so upset even seeing this headline. I feel like the moral of the photo story is- it’s all worth it because, look, we have these beautiful babies to show for it.  The 4th trimester.  What about us?  We are not even underrepresented- we are passed over entirely.  It angers and saddens me.

Bridging the gap between the baby bereaved and those who love them–  I stumbled across this at such an opportune time.  It touches on something I’ve recently been trying to work on- rebuilding some lost relationships since my daughter died.  It’s not easy because I had built up walls.  I like how this article makes it a two way street- we are often quick to blame others for not understanding, not reaching out.  But we also play a role. In the time leading up to ThanksgivingI was dreading some face to face time with a baby around Mabel’s age.  Her mother reached out to me a few days beforehand, recognizing how the holiday might be hard for me and asking if there was anything she could do to make it easier.  It was such a gift- to be asked directly.  I was able to answer honestly about my concerns regarding seeing the baby and give warning about my unpredictable reactions.  It was SO much easier to be asked than to volunteer the info.

Meet the first model with Down Syndrome to walk at New York Fashion week.-  Love this!  It’s great to see more positive images of people with Down Syndrome in the media.

 

 

 

 

A little gift

 

From the individual who took cupcakes to my care teams on Mabel’s birthday

“As I walked out of Labor & Birth I heard someone call out to me. It was the girl at the front desk at the NICU where we had dropped off cupcakes earlier. She said one of the nurses wanted to see me. The nurse came out with tears in her eyes and gave me a huge hug. She told me that walking through Mabel’s life and death with her family was one of the most profound, beautiful experiences she has ever had. “It changed me and the way I practice. Please give Meghan and Chris my love and tell them I still think of them and Mabel every time I walk by that space.”

Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

• Donations to children’s museums- in CT, in RI
• Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
• 

  “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

• Flowers at Mabel’s grave

• 

  play dough too!

• Carrot soup
• Books that showed up as gifts (including the one on the right that came from unknown sender)

• 

  did any of you send the Help Thanks Wow book? it came without a sender…

• Gifts for children’s hospital in Boston and Indianapolis
• Shoveling neighbors snow in Massachusetts and Connecticut
• cards! so many cards!
• 
• Donation to help migrant workers and their families in Florida
• Diapers and kids treats donated to a homeless family in North Carolina
• Donation to a Down Syndrome organization in Virginia
• A children’s book donated to my town’s library
• Letting people go ahead in the airport line
• Buying ice cream for the kids at the next table
• Dinner buying for a cancer survivor
• Baking carrot cake for a friend
• Coffee bought for people in line behind the buyers
• A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
• A donation given to a homeless man in a wheelchair
• A donation to the Perinatal Mental Health task force in LA
• Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
• A carrot hat given to me
• 
• Presents donated to a local shelter including a carrot stuffy
• Donation to a high school lunar rover team in CT
• Handmade carrot wreath for my door
• 
• Letters from Thai high school students
• 

Pylectasis

The sonographer grabbed me in the hallway to tell me about the patient of mine she just scanned. The ducts in the kidneys looked a little dilated- upper limits of normal. She wasn’t sure if it was a real issue or not, but wanted to talk to me about it. “let’s send her for a level II,” I said, referring to an ultrasound over with the Maternal Fetal Medicine Specialists. “They’ll be able to tell.”

I popped in to see the patient quickly, just to tell her my plan. I wasn’t too fazed, because my sonographer wasn’t too fazed. And I told the patient just so. “Just to be safe, we’ll have them check it out.”

The next week I received the ultrasound report in my inbasket. “Bilateral pylectasis” it read. Water on the kidneys. The sonographer’s intuition was right. I was glad we had sent her for the follow up scan. She would need follow up ultrasounds in pregnancy to see what happens with the kidneys- sometimes the water goes away and there is no issue, sometimes it persists and the baby will need follow up with urology.

Not long after I saw the report, I got a phone call from the patient. She was upset.

“They really pushed me to get genetic testing!” she exclaimed. When I had offered her genetic screening for the common trisomies, like Down Syndrome, she had declined earlier in pregnancy. It wouldn’t change her management; she would have the baby regardless, she told me. But with the new news about the kidneys, the doctor had tried to explain that there can be an association with pylectasis and Down Syndrome. She ultimately decided to do non invasive genetic screen- cell free fetal DNA, which is an accurate blood test on the mom, that looks for fetal DNA in her blood. It tests that DNA for trisomies like Down Syndrome. It’s highly accurate.

At first I thought she was upset because she ultimately didn’t want genetic testing. “We can cancel the test,” I told her. But no, that wasn’t her issue.

She was upset because they told her that her baby could have Down Syndrome. She wasn’t even upset about the potential diagnosis, she was more upset at the presentation of it. From what I could interpret, she thought they were being so negative, when chances were, things would be fine.

We talked about how the doctors over there at Maternal Fetal Medicine are used to giving bad news- because they have to do it so often. That can affect their presentation. And it’s there job to tell every possible outcome based on what they find.

“If my baby has Down Syndrome, fine. I’ll deal with it. But don’t just jump to conclusions,” she vented about her experience there.

Ultimately she wanted to vent. And also hear that her baby might not have Down Syndrome. She rather remain optimistic until proven otherwise.

It was a strange conversation for me- one about Down Syndrome, but also not about Down Syndrome. She knows I had a baby that died, but I don’t think she knows that she had Down Syndrome. Out conversation could have sparked all sorts of feelings- a baby with kidney issue, possible chromosome issue- but surprisingly, it didn’t.

Is this progress?

Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

Words of Advice from Baby Loss Moms

At the end of my talk to my local midwifery students, I gave them a handout, that speaks volumes.  You may recognizes some words, because they were simply taken from the comments section in response to my question of what would you like midwifery students to know about baby loss.   Feel free to comment if you have more advice to give! Here is the handout:

Words of Advice from Baby Loss Moms

 

“Video clips of ultrasounds meant so much to me and I would have like a recording of my daughter’s heartbeat if they could have given me one. At the time I didn’t know it those would be my only memories of her. I appreciated when my doctors were honest but sensitive.” -mother of Caroline, carried to term after a Trisomy 13diagnosis, who lived for 58 days.

 

“I think they didn’t tell me anything because they had no clue what was going on themselves and wanted to wait until they had more info- but, that choice made things much worse!!!! Talk to the patient, you have to talk them through what’s going on, you have to tell them. Also: if there’s a chance a baby might not make it, you have to prioritize letting the parents see the baby while working out the logistics. I didn’t get to see my kid until after he was gone. I even asked but was told it was too complicated. That’s still absolutely devastating to me, and probably always will be….One other thing: I was given the choice to go to private room on postpartum, or to a different floor. I really appreciated having a choice.” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Perinatal loss can be such an “ambiguous loss”. It was so validating to see everyone reinforce that he really was a real baby (a concept that almost all brand-new mothers struggle to comprehend at the moment of birth).” –mother of Sacha who died day after birth from unexpected brain tumor

 

“Even if the death occurs later, call or write or visit the parents. We so appreciated that one of our midwives and her intern were able to make it to the ceremony we held for Paul. But a call would have been just as meaningful…. If applicable, invite the parents to share a photo of their baby for the baby photo board or book.” –mother of Paul who died unexpectedly a few weeks after birth

 

“And for subsequent pregnancy: if you need to discuss the death of the previous baby, give notice in advance so the parents can prepare (especially if you need them to tell their story, or to dig into traumatic events). Also I was offered a viability scan I didn’t “need” but that was really reassuring.” –mother of Paul who died unexpectedly a few weeks after birth

 

“With miscarriage (or infant death in general I suppose), even if there is ‘something wrong’ with the baby that you can prove with genetic testing, no one should ever say ‘It’s OK- the baby had a problem anyway.’ I’ve noticed a lot of pregnancy books use this kind of logic, and it’s bad. We don’t throw out people or stop caring about them because they’re sick, so what are we supposed to feel better that our baby that died wasn’t perfect, and that caused his death?” –mother of Serphim, who died of Potter’s Syndrome five hours after birth

 

“Encourage parents to hold, kiss, love, bathe their baby… If you’re uncomfortable handling a dead baby, please ask one of your colleagues to take over. This was our only negative experience with the staff- and it felt awful to have someone reject our precious babies. Remember that these parents need your care, support, love perhaps more than anyone else on the floor.” –mother of A&C, twins who died after PPROM at 20 weeks.

 

I was that woman, sitting in the OB office following my 19 week anatomy scan when the midwife came in with a student and very coldly and matter-of-factly started to explain the slight anomaly found on ultrasound. When I started to cry the midwife offered little support and I could tell she was busy and I think she really believed the finding was nothing major and that I was over-reacting. It was the student who came back into the room alone and sat with me, let me cry, and explained what was going on as best as she could.   So my advice to your students is that there will be days in clinic when you are busy and running behind and stressed, and these are the days when you might have to break bad news to a patient (or several patients), and your pager might be going off, and your receptionist might be reminding you that you have 3 patients in the waiting room, and you will probably have a huge stack of papers on your desk that need to be reviewed… but in that moment, for that patient- your time and presence is what she needs most.” –mother of Clara, carried to term after a Trisomy 18 diagnosis and born still at 36 weeks

 

“It might be tempting to let the parents know that their loss isn’t a big deal compared to what other people go through, but that can be very disturbing to the grieving parents. Don’t tell them it was nature’s way of getting rid of damaged goods. It was their baby. They loved that baby and would have done anything to save it. To you, it was a blighted ovum, or a common Trisomy problem, or ‘barely even a positive’ – but to that family it was precious and beloved. The loss is still very real no matter how unformed the physical person may have been.” –mother to baby lost to miscarriage

 

“Our nurse hung a doorsign of a baby in an incubator on our door so that those entering my postpartum room would know that we had a NICU baby. That was great as it eliminated any too-cheerful questions. However at my six week postpartum checkup, the doctor didn’t know my baby had died.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“Cyr, take photographs- YES. And remember, you can never tell a loss mom that her baby is too beautifulm too perfect, too special and too unique. She will never hear this as her child grows. Give her a lifetime of school picture Oohing and Aahing in the short time you have with her. Use the baby’s name.” –mother of Anderson, born at 24 weeks who lived for 26 days

 

“I was pregnant with our 2^nd baby and had our first u/s at 9 weeks. They couldn’t find a heartbeat. I t was hard and still is. I recall the u/s tech saying ‘oh I just know you’ll be back in 3 months pregnant again!!!” She was just so hopeful. But that’s not what I wanted to hear. I needed to honor THIS baby and THIS loss. So overall, I just wanted the midwife team to honor the present and respect what we are going through at the moment.” –mother of baby lost through miscarriage

 

“To make sure parents have all mementoes of their baby that they would like; to make sure parents know they have no been ‘cast adrift’ from the unit- you become so close to staff whil your baby is being cared for going home is like an estra wrench on tope of the loss of your baby; to make sure parents know how to access counseling. I would also add a couple points about traumatic birth- whether it’s something like PPH or an illness such as preeclampsia and HELLP syndrome- that mums know where to get information about what happened to them and why, and how to access support/forums/debrief about the birth.” –mother of Hugo, born at 24 weeks and lived for 35 days

What more do you have to add?