A person’s a person,
no matter how small”
– Dr Seuss
Today, October 15, 2019, we pause to remember the stars of our soul that were extinguished far too early.
To the parents who are missing their babies today and always, The Band sends our love and prayers.
To our babies, the babies who never got to experience the joys of Earth, whose lives were cut very short, we miss you.
We miss you. More than anyone can ever know. We wish we could have one more moment – one single moment – with you, as we can’t have a lifetime.
Today, we honor the short lives of some of the brightest souls, souls that have touched many and have taught us to cherish all of life’s moments.
To our babies who we carry in our hearts, instead of our arms, we will never forget you.
Band Back Together’s Wall of Remembrance:
- Mary Katerina, miscarriage March 13, 2008.
- September 23, 2010, miscarriage.
Amanda and John’s Babies:
- Juliana, July 2008, miscarriage.
- Charlie, November 2009, miscarriage.
- Samantha, March 2010, miscarriage.
- Her 3 Littles, December 23, 2010, missed miscarriage/June 2011, miscarriage/December 6, 2011, Autosomal Recessive Polycysitic Kidney Disease
Another Becky’s Baby:
- Baby Savu, August 2004 missed miscarriage between 3rd and 4th month.
- Baby Garrett, September 13 2012, Miscarriage
Aunt Becky’s Babies:
- February, 2008, Baby 1, miscarriage.
- March, 2008, Baby 2, miscarriage.
- August 2017 ,Tuesday, miscarriage
- February 15, 2000, miscarriage.
- Pregnant October 2011, unpregnant January 2012, ectopic pregnancy.
- July 15, 2008, miscarriage.
- June 13, 2005, miscarriage.
Baby Noah Walter
- January 2012, miscarriage.
- Malcolm, January 2008, miscarriage.
- Ophelia, April 2009, miscarriage.
- Caden, miscarriage, May 1989.
- Aubrey, miscarriage, December 1993.
- Kaycie, miscarriage, 6/14/2011.
- Baby Jones #1, February 2007, miscarriage at 12 weeks due to blighted ovum (Empty Gestational Sac).
- Michelle, November 1991, miscarriage
- 2 babies, miscarried in 1994 and 1999.
Elsie’s Ten Possibilities:
- Nine Embies, 2008
- Lola, 2011
- Baby 1, September 2006, miscarriage.
- Baby 2, January 2007, miscarriage.
- Baby Girl 1, December 2008, late miscarriage.
- Baby Girl 2, August 17, 2009, born still at 18 weeks.
- March 2005, miscarriage at 13 weeks.
- Biscuit, July 18, 2012, miscarriage.
- Unnamed baby, 6w1d, September 18, 2010, miscarriage.
- Unnamed baby, 6w2d, June 22, 2011, miscarriage.
- Unnamed baby, 5w, August 15, 2011, miscarriage.
- Pregnant in December, 2007. Unpregnant by February, 2008.
- Forget Me Not #1, February 2009, miscarriage.
- Forget Me Not #2, January 2012, miscarriage.
- Baby M, September 10, 2011, miscarriage.
- Stella, February 13, 2011, miscarriage.
- June 8, 2008, early miscarriage.
- November 2007, early miscarriage
- November 2011, early miscarriage
Justine and Boo’s Baby:
Kallay and Ryan’s Baby:
- Baby C lost to a partial miscarriage, May 17, 2010. Baby C is survived by twin sisters, Lily and Molly who were born on December 7, 2010.
- Mari Elizabeth, September 2003, miscarriage
- Noah Douglas, October 2004, miscarriage.
- Twin Angels, July 2006, miscarriages.
- Rebecca, June 3, 1995, miscarriage.
- Baby Sluiter A, April 2007, miscarriage.
- Baby Sluiter B, May 2008, miscarriage.
- Baby 1, September 2009, miscarriage.
- Baby 2, May 2010, miscarriage.
- Lola, October 9, 2012, miscarriage.
Kelly and Brad’s daughter:
- Lily Catherine, February 18, 2010, miscarriage.
- Baby 1, April 2003, miscarriage.
- Baby 2, October 2004, miscarriage.
- Baby 3, February 2006, miscarriage.
Kendra Pocock’s Baby:
- Baby JJ Pocock, July 13 2012, Miscarriage/Ectopic Pregnancy
- Baby, October 1996, miscarriage.
- Baby One, son late term miscarriage at 15 weeks.
- Baby Two, second-trimester miscarriage at 14 weeks.
- Baby Three: miscarriage, 11 weeks.
- Baby Four: miscarriage, 13 weeks
- Baby Five, late miscarriage, 16 weeks.
- Eva, miscarriage
- 7 other babies lost through miscarriage due to luteal phase disorder and clotting disorder.
L. Moses’ Baby:
- Baby Moses, July 17, 2008, ectopic pregnancy
Lara and Brandon’s Son:
Lauren C’s Angels:
- Baby, August 27, 2007, miscarriage.
- Baby Boy, January 13, 2011, miscarriage.
- Baby May 9, 2011, miscarriage.
- Cameron, born and died May 22, 2009 at 10 weeks.
- Jeremiah Oliver and Jillian Olivia, twin babies. Second trimester loss July 9, 2010 and July 14, 2010 respectively.
- July 1994, ectopic pregnancy resulting in emergency surgery.
- Natasha Anastasia, September 7, 2011, miscarriage.
- Baby B #3, September 1, 2011, miscarriage at 5 weeks.
Marlowe Corrine, September 19, 2006, early miscarriage.
- June 11, 2011, miscarriage
- Baby Angel, February 8, 1998, blighted ovum/miscarriage
- Albert Eugene, October 31, 2000, miscarriage
Mindy’s Three Angels:
- Angel One, September 9, 2005, miscarriage.
- Angel Two, July 17, 2007, miscarriage.
- Angel Three, September 25, 2010, miscarriage.
- Peanut, August 7, 2011, miscarriage.
- Baby One, February 2, 2011, miscarriage.
- Hosanna Joy, June 18, 2011, early miscarriage.
- Cody Ryan-Price Grodan, February 14, 2012, miscarriage, 12 weeks.
Nicole and Jake’s baby:
- Baby One, September 19, 2011, miscarriage.
Rachel and Jesse:
- Babies due Aug 2008 and November 2010. Both lost to miscarriage.
- Alivia Mason, March 21, 2012, miscarriage.
- First Angel April, 2013, miscarriage
- Second Angel July 2013 miscarriage
- Isaac Ephraim, miscarriage August 2006.
- Isaiah Jeremiah, miscarriage January 2007.
- Ella Alicea, ectopic pregnancy June 2009.
- September 2006, miscarriage.
- April 12, 2002, miscarriage.
- September 3, 2008, miscarriage.
- Baby Bun Bun, April 2017, miscarriage
- Baby #3, June 2000, miscarriage from a blighted ovum.
- Athena Rose Moore, Girl Twin B
- Grace, 10/29/2001, miscarriage
- October 1990, miscarriage.
- September, 2002, miscarriage
- July 17, miscarriage
- September 25. miscarriages.
- 2008, Little Soul 1, 2008, ectopic pregnancy.
- 2009, Little Soul 2, 2009, ectopic pregnancy.
- Sean Michael, April 14, 1987, miscarriage.
- Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
- Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
- Orion, stillborn May 8, 2004
- Benjamin, September 4, 2012, stillbirth.
- Bella Rose, stillborn on September 9, 2009.
- Emerson Allen Behrends, July 10, 2001, stillborn.
- Jonathan Edward, June 4, 1992, stillborn.
Debbie And Jeff’s Daughter:
- Chloe Eva, September 12, 2008, stillbirth.
Heather and David’s Daughter:
- Clara Edith, July 1, 2012, Stillbirth at 42 weeks, 3 days due to meconium aspiration and uterine infection.
Jill and Mark’s Baby:
- Haven, November 26, 2003, stillborn at 38 weeks gestation
- Ruth, January 3, 2013, stillbirth
- Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
- Pippa, born still on February 13, 2011 from listeria infection.
- Stillborn, born still 2017
- Kaitlyn Grace, stillborn, born still, May 13, 1995.
Louise and Joseph’s Baby:
- Alice Mathelin, born still on February 25, 2011, at 36 weeks and 5 days from Abruptio Placentae
Martha’s Twin Boys:
- Owen died March 8, 2008 because his cord wasn’t properly attached to the placenta.
- Joshua died one month later, April 6, 2008 because he couldn’t live without his brother. Both were born still on April 8, 2008.
- Summer Lily, born still March 30, 2011.
- Jordan Ala, stillborn on November 13, 2006.
- Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
- Sam, 1997, intrauterine fetal demise
- Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
- Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
- Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Amy and James’s Babies:
- Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM).
- Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Baby Helen: Born July, 1993. Passed from prematurity.
- Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
- Emily, prematurity born 19w 5 days – was too small for the equipment.
- Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Aaron’s Son:
- Aodin R. Hurd, October 7, 2007, born still due to premature rupture of the membranes.
- Kevin William, prematurity, 2005
- Baby S, March 2008, Miscarriage
- Evie, December 14, 2009, Triplet Prematurity
- Jack, December 22, 2009, Triplet Stillbirth due to Prematurity
- Will, January 13, 2010, Triplet Prematurity
- Baby M, May 2010, Miscarriage
Kristin’s Baby (Mama KK):
- Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
- Ayla and Juliet, October 20, 2009 at 20 weeks.
- Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Matthew Chase Sims:
- April 25th, 2006 due to prematurity.
- Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
- Samuel, August 8, 2001, prematurity.
- Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
- Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
- Mikel Azariah and Willamina Azaria born August 12, 2019.
- Mikel was stillborn,
- Willamina was premature at 22 weeks 6 days
S & T’s Son:
- William, November 2, 2013, 24 weeks, 3 days, prematurity
Collin, complications from prematurity, 2009
- Erik Richard, July 29, 1981, prematurity.
Aaron and Kristine’s Son:
- Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
- Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days.
- Mateo was born still.
- Anthony passed away from Transposition of the Great Vessels.
- Ian passed away after a short stay in the NICU.
- Nathaniel James, August 24, 2001 – August 29, 2001, Citrullinemia
- David Henry, May 11, 2010 – January 24, 2011, Citrullinemia, passed away after becoming sick post liver transplant
Baby Khalil, born August 14, 2009, stillborn, born still from birth defects.
- Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
- Ethan Connor Brockwell, May 3, 2006 – August 17, 2006. Born with Hypoplastic Left Heart Syndrome.
Christopher: November 4, 1979, due to pulmonary atresia, a congenital heart defect.
- Aidan, born with brain malformation on December 16, 2008 and passed on December 19, 2008.
Cora Mae McCormick:
- November 30, 2009 to December 6, 2009 from a congenital heart defect.
- Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
- Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
- Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
- Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
- Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
- Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
- Starbaby, born still February 2008 due to Trisomy 18.
- Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
- Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
- Nathaniel, born August 24, 2001 and died August 29, 2001 from an undiagnosed metabolic disorder.
- David, born May 11, 2010 and Died January 24, 2011 from a myriad of complications resulting from a liver transplant.
- Leia Sky Williams, born October 6, 2011, passed away from Group Beta Strep.
Baby Kash Michael:
- Born June 3, 2011 and died September 28, 2011.
Carey’s Triplet Sons:
- Rudyard, Desmond, and Oscar, June 4th, 2011, born at 22 weeks due to of E. coli infection.
- Nicholas and Zachary, October 27th, 2004.
Heather and Joe’s Twins:
- Jonathan Michael and Samuel Joseph, identical twins born alive and died on May 6, 2004 from extreme prematurity and twin-to-twin transfusion.
- Charlie: Born May 21, 2003 and died June 14, 2003 from late-onset Group B Strep.
- Will, born (today) October 15, 2002 and died on September 16, 2003 from complications of late-onset Group B Strep.
- Malakai Zachary born still March 10, 2007 due to Anencephaly.
- Five more angels, July, 2007 – May, 2010. Miscarriages.
- Catherine Grace, born August 10, 2012, passed August 12, 2012, due to prematurity brought on by HELLP syndrome.
- Kaitlyn Grace, born sleeping at 38 weeks on Saturday, May 13th, 1995. Died from a true knot in her umbilical cord.
Matt and Lauren’s Baby:
- Isla, born 14 weeks premature on August 23, 2011 and died on October 10, 2011.
- Mina Kathryn, born February 18, 2009, died February 24, 2009, due to complications with her PICC line.
- Baby R, May 24, 1998, Medicine Administration by RN who didn’t know or ask.
- Matthew Conner Webb, born January 11, 2005 and died February 26, 2005. He was born at 26 weeks and faced many obstacles in his short life.
- Ziggy Ann born sleeping on January 21, 2009.
- Frank born sleeping May 21, 2010.
- Liberty Ann born March 30, 2011 and died on April 19, 2011.
Ally’s Son: Collin
- Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
- Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
- Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
- Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
- Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
- Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
- Addison Leah, June 13, 2008, accidental death.
Jessica and Mark’s Daughter:
- Hadley Jane, born October 9, 2001 and died October 11, 2007.
- Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
- Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
- Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
- Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
- Cullen, September 11, 2010, stillbirth.
- Brian Vitale, accidental death, September 4, 2007 – June 3, 2010. We miss him more and more each day.
- Patrick, born April 10, 1977, Adoption
- Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
- Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
- Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
- Nathan Michael King, died from SIDS November 2008.
- Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
Chance, July 25, 2014, homicide
My son is now 10 weeks old. He has a congenital heart defect and severe birth defects, limb differences with all four limbs affected.
I’m here now because I have a story to tell, a story with infinite ellipses and a looming question mark. It’s just the beginning of a story, really.
But does the story about my new son start the day he was born? Or the week before when we learned he had profound defects and would likely not survive? Or the start of my pregnancy when I learned he was one of three, two of whom did not remain viable?
I think to get the most understanding of who this boy is, what he means to us, I have to back up even more.
My older children are almost thirteen and nearly six. I joke about the seven year age gap being one of the “best kept secrets” of family planning, but there really wasn’t any planning involved. The big space, while wonderfully beneficial and I wouldn’t change it now for anything, wasn’t the result of careful decision making, but rather inexplicable secondary infertility. I always imagined myself as the wisecracking mom to a passel of feisty kids. I wanted the rowdy chaos of a big family. But my quirky biology didn’t comply.
I lost a pregnancy early in the second trimester, about four and a half years ago. I’ve had a number of very early miscarriages, which were disappointing, but nothing like the devastation of losing one after crossing into the proverbial “safe zone.” That loss resulted in lingering complications. It was a difficult time to live in my own body.
So when I found myself surprisingly expecting back in the early spring of this year, it was hard to believe. It was hard to tell myself that it was true, let alone to tell anyone else. It was too fantastic.
I felt like maybe I could protect the idea of it and make it stay real somehow by not breathing it aloud to others. And then I started bleeding. And I bled constantly for over a month, during which I learned I was losing two tiny embryos. How ironic that years of wonky fertility would find me knocked up spontaneously with three, each in a separate sac? But the irony turned around on itself, like a mobius strip, and it was a pregnancy loss after all.
There were weeks of not knowing if it would be a total loss or not.
When the bleeding stopped, there was one scrappy baby, holding on in there.
And suddenly, I was the caretaker of this tremendous and wonderful news. It was too unreal and too thrilling to me to want to share the news.
How could I tell anyone that I was pregnant and have them possibly understand what that could mean to me? Of course, such knowledge comes up organically, in conversations and double-takes (is she or isn’t she?), and it didn’t stay my sweet secret for long. But, even once the word started getting out, I didn’t make a deal of it.
I didn’t tell Facebook (also, fuck Facebook. while we’re at it.) and I didn’t make any grand announcements.
You’d think if I was so happy about it, I’d want to sing a song from the roof and do a mass postcard mailing, but it was just too precious to expect anyone else to appreciate, and I felt very protective.
Once the high drama of the first trimester passed, it was a long dull slog through ill-fitting pants and raspberry leaf tea and heartburn.
I had delightfully warm and chatty visits with my homebirth midwife; we organized the house and checked off an industrious home improvement To Do list; there was only completely glad anticipation.
I had what I hoped would be my last prenatal appointment on November 2nd, which was also my “due date”. My midwife didn’t feel certain about the baby’s position and had me zip down to an imaging clinic for a quick ultrasound. I had a lot of anxiety on the drive. I was down to the wire, for sure, and didn’t have any time to flip a breech baby.
The ultrasound tech saw right away that baby was head up. I sighed and tried to remain cool.
I’ve got this, I thought. Maybe the baby won’t have the exact birth we’d been planning, but it’ll be okay.
And then the tech asked me to wait in the room. I was confused by this, and called my husband. “Baby’s breech” I told him when he answered, “but it’s a baby in there, not, like a cat or something. I saw the head and I think the hands.” And then he asked me, “the right number of fingers?” And then I had to hang up quickly, the tech was coming back with someone else.
I was introduced, in that small dark ultrasound room, to an older man, the radiologist. He shook my hand and then blurted out, “Your baby has multiple abnormalities.”
He said the baby had deformed limbs, missing fingers, probably missing other parts. I could barely hear him from this whooshing sound suddenly throbbing in my head. I stood up and grabbed my bag. “I don’t know the words to say,” I remember saying. And that’s all I said. I walked out of the room, walked past the waiting area and said to my big girl, contentedly reading a book by a window, “We’re leaving now,” as I walked out the door.
I know by the time I got into the car I was crying. I know that I tried explaining to my daughter why I was crying, except I didn’t know. I know that I called my husband and somehow told him.
I know that my midwife called me and told me not to drive myself home. I know that I told her I’d be fine. I’m fine. It’s fine. Fine.
I know that I kept telling myself I can’t crash the car because I have to take care of my daughter.
I know that by the time I got home, about forty-five minutes away, my husband was also there.
I know that we left almost immediately to the city, where somehow I’d been fast-tracked into an appointment at a maternal fetal medicine clinic for a level II ultrasound and an amniocentesis to see what congenital birth defects that he had.
I know that I cried all the way there.
What happened next is we learned this baby we’d been expecting all along had “significant” and “profound” birth defects, in and out. We learned he was a boy.
We learned that he had syndromes that were considered “incompatible with life.”
Two days after that appointment, we had a consultation with a neonatologist and a meeting with the hospital ethics committee. Maybe you already knew that hospitals have ethics committees, but I did not. By this time, our baby’s file had been shared with a multitude of specialists who carefully analyzed his congenital birth defects.
The neonatologist told us that she did not think it would be unreasonable for us to proceed with an out-of-hospital birth. By which she meant, there is not a lot they can do for this baby, so maybe you just want to spend his last moments peacefully at home.
We were braced for the worst. The best was still very bad. Based on his rare and complex congenital birth defects, all best guesses determined that the likelihood of him having severe neurological impairment was very, very high.
Would he be able to eat?
The ethics committee gave us their veritable stamp of approval, entrusting us wholly with all decisions. We discussed how long we would continue support for our child? What kind of support? I learned the phrase “palliative care”.
There was one week in between my world falling apart and his birth. One week of such deep despair I won’t even begin to describe it. One week of waiting for him to be born so he could die and we could say goodbye.
One week of listening to Pearl Jam’s Just Breathe over and over and over again, like some kind of prayer.
Among our ethics committee approved plan was my insistence on avoiding a C-Section. I don’t suppose that the hospital sees a lot of vaginal breech births. Probably fewer Pitocin-induced vaginal breech births. I also was firm about refusing fetal monitoring. Did I want to hear the heartbeat of a baby who would not live?
And while my other babies were born triumphantly without pain relief of any kind, I assumed I would need something to get me through this dreadful thing I had to do. In the end, though, the drug made labor so hard and fast and intense, I was out of my mind with the hurt of it all and did not have time nor wits to request pain medication.
I say that not out of pride, for there is nothing to be proud about what was the darkest moment of my life, but just to illustrate what an unusual birth it was.
Everything about this boy has been unusual.
There was no tender welcoming a new life into the world. He was zipped across the hall, neonatologist and NICU nurses and cardiologist and geneticist and who the hell else at the ready, to check out his birth defects. I turned my head away and didn’t even want to see him go.
We heard him cry. It was a confusing sound. We thought he would need intubation. It was assumed that his heart defect would prohibit his lungs from working efficiently.
But he was crying.
And they brought him back to me. And they said he was healthy.
And I held his tiny broken body and I nursed him and he latched on better than my other babies latched on as newborns.
And I cried.
I cried because he wasn’t dead and I cried because he was alive. No one mentioned the possibility of leaving the hospital with a disabled baby. How do you even prepare for such a thing? There is no preparation. There is only disbelief.
His stay in the NICU was brief, just over a day, for monitoring. This little champ maintained a near perfect blood oxygen level, despite his heart defect. He’ll need surgery sooner than later to repair his broken heart. The pediatric cardiologist explained it as a common congenital defect, a routine surgery. But in my world, there is nothing common or routine about open heart surgery for a brand new baby.
Prior to this roller coaster, the most serious medical situation my family experienced was that time my daughter had stitches by her eye eleven years ago. How’s that for contrast?
How do I tell you about this baby?
I do not want the sum of him represented by what he is not, what he is missing, the challenges that await us.
But what else is there yet?
His issues are not minor. His bilateral leg condition alone occurs approximately once in every one million live births. He will never walk without serious, invasive surgeries and devices. Amputations. Prostheses.
Do you know what a mindfuck it is to hear such words about a newborn?
Can you feel the weight of this?
My big boy, the bouncy one, the easy-going one, the boy with the casual shrug of his shoulders, mentions his baby brother’s hands like it’s the most obvious, simple thing ever. “He only has three fingers on one hand,” he says, “and two fingers on the other one.” So matter of fact. No catch in his throat. No mourning the loss of future handprint turkeys or making the motions to so many kid songs.
I’m not there yet.
I’ve been looking at and loving on those tiny malformed hands for fourteen days now and it’s still hard for me, even as they tell me “it’s just mechanics” and “he’ll figure it out” and other encouraging platitudes.
I am usually so guarded and private. It’s out of character for me to share so much here, even as I’ve intentionally omitted specific diagnoses (a grouping of several, with no umbrella catch-all for them all together as of this point). But everything is different now. Since we’ve been home from the hospital, I’ve been hiding. A few people have met this surprising baby, but we haven’t yet left the house, save for doctor appointments.
I can’t hide indefinitely. I will have to be brave and bold enough to withstand whatever questions and curiousness occurs when the world meets Ulysses.
He looks an awful lot like his big sister did as a newborn. Same deep eyes, same frowny mouth. When he’s all wrapped up in a blanket, you would never know that he has such serious things going on. And I can assure you that he does not know. Everything else about him is just what you’d expect from any newly born babe. He squirms and fusses.
He makes those mysterious sleep smiles. He flails his arms when a loud sound startles him. His brain seems normal. Everything else about him seems normal.
There is nothing normal about our life now.
We have so many appointments scheduled. He has already had more doctors examine him than maybe my other two children, myself and my husband have ever had, all together. I don’t know how to get used to living such a highly medically managed lifestyle.
It’s been just three weeks since everything changed. So much information to process in such a short amount of time. I’ve blamed myself incessantly, even as I know there was nothing I did or did not do to cause this. That is the absolute truth, and yet, I worry that people will wonder… of course they will. People with murky knowledge of genetics, people who have grown lazy in their own good fortune, people who can’t possibly know how wanted and treasured this little baby has been all along.
Everyone’s delighted that he survived the birth, that he is thriving.
And yes! What a great outcome!
But now what?
Since I wrote that, we have laid out a plan for open heart surgery (soon) and orthopedic surgery (before his first birthday). He is growing plump and smiley.
You are invited to add your child’s name in our wall of remembrance for those babies who’ve been taken from us too soon.
In remembrance of the older children that have been taken too soon, we invite you to share your child with us here.
A few days after my daughter died of an undetected congenital heart and birth defect, someone who had held her and spent some time around her told me, “I knew something wasn’t right with her. I knew something was wrong.”
The phrase has stuck with me.
My daughter was perfect.
I don’t like the word defect much. All of these children born with what we call “defects” are just perfect; they aren’t defective. She had a beautiful heart even though it had a deadly congenital defect in it that lead to her loss.They are the imperfectly stitched handbag sold at a discount. They are much more than their sickness or defect.
I used to think that birth defects only happened to babies of moms that were sick or did something, like smoke crack while pregnant, or to a family with a genetic history of congenital heart birth defects. Smoking crack was never my thing, and my family has no history of birth defects -especially congenital heart defects – so losing a baby to a heart defect wasn’t even on my radar. None of the babies in my family were in the NICU or really sick, and definitely none of these babies had ever died.
My daughter’s heart problems weren’t my fault. She might have been a sick baby, but it was something that happened at random.
Her heart didn’t work properly, but she was not defective.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
I’ve only ever lurked on Band Back Together, but I feel like I need to tell my daughter’s story.
The pregnancy itself wasn’t bad, just the normal aches, pains, and nausea. Emotionally it was tough – there were issues found on ultrasounds, and my OB felt like it was her duty to present the worst-case scenario every time we spoke. I decided that if we had to hear bad news, I wanted it to be delivered by someone who was kind and knowledgeable, so we switched doctors and started seeing a maternal-fetal specialist.
He told us that there would be kidney issues when she was born, but nothing emergent.
My water broke 2 days before my due date. I had a good, quick labor. There was meconium in the amniotic fluid, but otherwise it went well. She was born just after midnight, with good Apgar scores. She weighed nearly nine pounds! She had no interest in nursing, and she wasn’t into the formula they offered, either. A couple hours later, her blood sugar started to drop, and then she stopped breathing. They took her to the NICU for observation. I’d worked a full day before my water broke, so by the time they took her away I had been awake for almost 24 hours. I was sent to a recovery room without my baby.
That day and the next are a blur. This was my first child, and I had no idea what to expect from a normal birth or a brand new baby. I only knew that this was not what I expected. I alternated between recovering in my room and sitting with my daughter in the NICU. She would barely take any food and kept even less down. There were multiple doctors coming in and out and multiple tests being done – blood draws, x-rays, upper and lower GI, etc.
Finally they determined that she had intestinal malrotation. That means her intestines were jumbled and twisted and not anchored in any way. If untreated or undiscovered, it quickly damages the bowels and then leads to death, essentially by starvation. Surgery was set for Friday night, the same time that I was to be released. I had no choice but to hand over my 3-day old baby to be intubated and placed under general anesthesia so that a surgeon could cut open and rearrange her guts.
My husband, my mom, my mother-in-law, and a close friend were with me during the surgery. Around midnight, the surgery was finally complete. They would only allow 2 people in the room with her at a time, so I stayed there while everyone else took turns coming in to see her. I can’t even describe how it felt to see the 3-inch incision across her tiny little belly. She had wires and tubes everywhere, and we were not allowed to hold her. I could tell she was in pain – when on a ventilator, the vocal cords don’t make noise, but I could see her screaming.
My mom and dear friend knew what kind of comfort I needed – they just held me and murmured words of consolation while I tried in vain to keep it together. My mother-in-law was not so in tune with what I needed – she wanted to touch her, and exclaim over her, and it was all just too much for me. I was completely helpless and broken. I had my husband make everyone leave, and then I left, too. I left my silently screaming baby in the care of total strangers, Band. At that moment, I was certain that the nurses could do more for her than I could. Now, when I look back, I am unable to forgive myself for leaving her.
That night turned out to be the beginning of a long journey. She had 2 more surgeries and lots more testing; we found out that she has a genetic anomaly that seemed to be the cause of her birth defects. She was 9 weeks old when we were finally allowed to take her home – just a few days after my first Mother’s Day.
My daughter is now almost 3 years old. She has very low muscle tone and is still quite delayed, and she is a beautiful, happy, easygoing little girl. She wears her battle scars with no complaint, and despite my failings, she loves me completely.
She is my ray of sunshine.
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I didn’t have much hope for our IVF cycle. We transferred two embryos and none of the remaining eleven made it to the freezing stage so I thought I had a couple of duds in my uterus as well.
I ended up pregnant with twins on our first try.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
Life altering not life ending.
Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.
The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.
Please, we encourage you to to submit your own stories of prematurity with The Band.
Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.
On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.
We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams. They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.
A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter. At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.
Wanting to just give Lucy a chance, they opted for the c-section.
Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length. At her lowest, she dropped down to 290 grams. She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.
She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged. Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back. She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.
Lucy spent 182 days in the hospital – six long months – before she joined her family at home.
Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges: she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight. She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.
The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start. Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues. It’s our chance to give back just a little bit.
Visit www.marchofdimes.com to find out how you can help!