Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
Amanda’s Baby:
Jamie, 4/6/2010
Angie’s Daughter:
Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
Ann’s Son:
Orion, stillborn May 8, 2004
Beka’s Son:
Benjamin, September 4, 2012, stillbirth.
Beryl’s Daughter:
Bella Rose, stillborn on September 9, 2009.
Brenda’s Son:
Emerson Allen Behrends, July 10, 2001, stillborn.
Danielle’s Baby:
Micah Rachel
Debbie’s Son:
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
Jolene’s Daughter:
Ruth, January 3, 2013, stillbirth
Leslie’s Son:
Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
Pippa, born still on February 13, 2011 from listeria infection.
Lillie Belle:
Stillborn, born still 2017
Lisa’s Daughter:
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.
Melanie’s Daughter:
Summer Lily, born still March 30, 2011.
Mel’s Daughter:
Jordan Ala, stillborn on November 13, 2006.
Melissa’s Twins:
Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
Nikki’s Son:
Sam, 1997, intrauterine fetal demise
Sarah’s Daughter:
Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
Stephanie’s Son:
Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
TiaMaria’s Daughter:
Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Prematurity:
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.
Celeste’s Son:
Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
Chantel’s Daughter:
Emily, prematurity born 19w 5 days – was too small for the equipment.
Christine’s Son:
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.
Jenn’s Son:
Kevin William, prematurity, 2005
Kate’s Babies:
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.
Leleisme’s Babies:
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.
Melissa’s Son:
Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
Melissa’s Daughter:
Hope, 1993
Nicky’s Son:
Samuel, August 8, 2001, prematurity.
Nina’s Son:
Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
Paula’s Baby:
Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
Qudija’s Babies
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
Vickie’s Son:
Collin, complications from prematurity, 2009
Yvette’s Son:
Erik Richard, July 29, 1981, prematurity.
Birth Defects:
Aaron and Kristine’s Son:
Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
Amy’s Babies:
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.
Amy’s Babies:
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.
Baby Kober
Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
Beth’sSon:
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.
Christopher’s Son:
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.
Ellen’s Son:
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.
Julie’s Daughter:
Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
Kathryn’s Son:
Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
Raquel’s Son:
Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
Ruth’s Son:
Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
Shannon’s Baby:
Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
Suzy’s Son:
Starbaby, born still February 2008 due to Trisomy 18.
Venita’s Son:
Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
Wendy’s Baby:
Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
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.
Amy’s Baby:
Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
Claudia’s Son:
Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
April’s Daughter:
Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
Colleen’s Babies:
Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
Jenny’s Daughter:
Addison Leah, June 13, 2008, accidental death.
Jessica and Mark’s Daughter:
Hadley Jane, born October 9, 2001 and died October 11, 2007.
Julie’s Babies:
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
Lanie’s Sons:
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)
Leslie’s Son:
Cullen, September 11, 2010, stillbirth.
Mindy’s Son:
Brian Vitale, accidental death, September 4, 2007 – June 3, 2010. We miss him more and more each day.
Nancy’s Son:
Patrick, born April 10, 1977, Adoption
Pharon’s Daughter:
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.
Suzie’s Son:
Nathan Michael King, died from SIDS November 2008.
Vanessa’s Daughter:
Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
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.
Delivery day.
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.
Fuck.
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.
We thought we were in a dream, all the joys and fears at the same time. We got two cribs, two sets of every outfit (but in different colors), two swings, two of everything…except two identical boys.
We lost Jonathan James when he was 7 months (in utero). I was given the choice, but I never held him. I had to carry his identical brother Lewis Jordan, for an additional 7 weeks. He just was not ready to leave his brother until then. We knew about the extreme risks of twin-to-twin transfusion, how our surviving son would likely have severe brain damage as blood shunting causes terrible problems for a developing baby. We prepared ourselves for the very real possibility that our surviving son might not recognizing us, speak or walk.
We were destroyed.
I spent the next 7 weeks in a rocking chair in the nursery with TWO of everything; rubbing baby lotion on my hands and inhaling, trying to stop the sobs and the unearthly sounding wails that came from deep within my heart.
But I had another to worry about. Lewis. During all this turmoil, the grief over Jonathan could not be allowed to hobble me too badly, I could not let it, I had to be ready to care for the child that was alive and waiting to meet his parents.
Thank Christ the doctors were wrong about Lewis’ challenges. He was born by C-section on a cold January day, crying out when they removed him from his space. I know he cried out because they were taking him from his beloved brother, Jonathan. They thought it was because he was cold and the lights were bright. Fools.
His kidneys began to shut down 3 minutes after he was born. As they whisked him away from me, I demanded my husband leave my side and go with our son, to protect him, and promise to bring him back to me, healthy and safe.
The OB asked me if I wanted to see Jonathan, warning me that the body’s natural reaction is reabsorbtion, I asked only one question, “are you sure they were identical?” The doctor replied, “one sac, one placenta.” I replied with a heavy heart while still wide open on the operating table, “no, I already know what he looks like, just like his brother.”
Two hours later, my husband brought back our son, placed him in my arms and kissed my forehead. The doctors had stabilized him, no further medical issues had arisen and today he is a healthy, happy, wickedly intelligent nine-year old boy.
I will forever be happy that our son is healthy.
I also will be forever crushed that he does not have his twin brother.
I wish I could make the ache go away.
I wish that I was not jealous of other twins.
I will always wish that I had been strong enough to bring both of my sons into this world (though I followed every order from the medical establishment, I will always blame myself).
