Thursday, August 21, 2008

New-Mummy - Remembering Aeryn Siobhan

New-Mummy's story:

When the idea began to take shape to start a fund to help Lisamomof4, several WIR members e-mailed me expressing a desire to help New-Mummy as well. I believe we WIR must have our radar set to the same wavelength, because that very thought had hit me time and again whenever I happened upon one of her posts.

Anyone present on the Women in Red board in early April likely remembers New-Mummy's story. But for those of you who are new or who were absent at that time, I'll try to tell you a bit of it here. New-Mummy is a mother of a preschool aged son and was expecting her second child, a daughter, this past spring. She found out very late in her pregnancy that there could be complications. Very serious complications it turns out. Most of us had never heard the term Hydranencephaly before, but we would soon learn it wasn't good.

"Hydranencephaly incompatible with life. Will be off the boards for a while."
I don't know about you, but the above post will never leave me.

Aeryn Siobhan was not long in this world, but her parents' grief was very real and their loss absolutely devastating. It was shared by many people who have never personally met them through New-Mummy's posts at WIR. Their loss is still so fresh I'm afraid to go on so I will give you her words to complete the story of their daughter.

Aeryn Siobhan was born at 8 am. She was 4 pounds and 13 ounces. They wrote on the certificate they gave us (the state will not issue a birth certificate for her, but the hospital made a nice little one for her with her footprints and information) that her hair was blonde, but it was looking like it would have been red like her brothers had she kept growing. She held on for nearly two hours, and she did try to cry and did try very hard to turn her head if you brushed her cheek. The neonatal doctor attending basically grabbed her from my expletive doc, cleaned her a little, checked that she was breathing, and gave her a mild painkiller, then while the nurse was wrapping her up came and let us know that it was definitely hydranencephaly, warned us that Aeryn could not open her eyes due to the skull malformation, and told us what she had done medically. Then Aeryn was put in her daddy's arms and stayed there until they finished stitching me up. She was in someone's arms the whole time she was alive, and she was snuggled and kissed and loved. They did allow us to stay with her as long as we wanted, the nurses were wonderful. Three of the sisters (Catholic facility) even came and prayed and blessed her.

When you lose a loved one to a medical condition, unfortunately you don't usually lose the associated medical bills. Savings depleted from tests and related expenses don't magically reappear. Ironic and sad how that works. Often when there is a death, a memorial fund is established to help cover funeral/burial expenses or to be designated to the memorial of the family's choice. But for some reason this ritual doesn't seem to apply to a newborn. I don't believe it's because people don't care, I think most simply are at a loss as to how to respond in the situation. Too often we're afraid to say or do the wrong thing, so we do nothing.

Let us reach out to New-Mummy and her young family. Her posts at WIR have exposed her heart - laid it bare for all to see. Whether one realizes it, that (sometimes brutal) honesty is a gift to us. Without pretense she gives us insight into very powerful human emotions and struggles. That insight leads us to feel compassion and let's face it, that's something this world could use more of. May we each be left with it in our hearts and let it serve us well in our everyday lives.

New-Mummy has mentioned that they have been looking into replacing the garden stone temporarily honoring Aeryn. When asked on the board about grief counseling she's indicated that couseling hasn't yet been arranged due to lack of childcare for their son and related expenses. It's not too late to establish that memorial. I hope you'll help to honor her daughter's memory.

Let her family know that Aeryn's short life had meaning and will not be forgotten.


AJ said...

I cannot begin to imagine the devastation one feels at the loss of a child. Having lost both my parents by the time I turned 35 nearly crippled me emotionally, thanks to all of the wonderful people I have met through WIR esp. the CS group I have been able to finally see that life doesn't stop. I don't know right now how much I can give, but I am looking forward to helping to add meaning to little Aeryn Siobhan's life as well as helping to ressurect the memorials to Robbie and Nat. May God's love shine on each and everyone who reads this blog. May Barb's words move you as they did me.

MittenKitten said...

Thanks Barb for doing this. I was actively posting on the parenting thread when New Mummy was pregnant and gave birth. I cry everytime I read the post New Mummy left or think of her situation thus I could not even imagine how hard it would be. I was grateful though that at her time of loss she kept us informed, I am sure it was not easy. New Mummy know that Aeryn is not forgotten her life has helped me appreciate my kids all that much more.

HBT-WI said...

I sat at my desk and cried when I read this: "Hydranencephaly incompatible with life. Will be off the boards for a while."

and the later description of the callous treatment of the doctor in the hospital.

Aeryn was loved her passing was observed with the love and prayers of many.

May God keep you family close and help you through this difficult time.

I hope you can use these funds to facilitate some grief counseling for your family and or a memorial for Aeryn.

Thanks to Barb and Sheila in Cali for all the work to get this going.


Anonymous said...

My heart goes out to New Mummy and her family, especially since my family recently went through a similar situation.

My sister-in-law was 6 months pregnant with her first child when they first heard the word hydranencephaly. Because the condition was so far along, they made the incredibly difficult decision to terminate the pregnancy. Katrina was born sleeping on August 9, 2008.

As I am not yet a mom, I can only imagine how it has affected them...I can only do what I can, yet feel incredibly helpless at the same time. I do know, however, that having a memorial and and proper service for their daughter was absolutely essential for them to feel a sense of resolution - a way for them to say goodbye.

To have to be financially burdened for doing something so necessary is terribly unfortunate. I hope that my contribution, however small, may be able to help them in their road to recovery.

Rest in peace, Aeryn Siobhan.