Death is never an easy event to have looming on the horizon. Even the approaching, painless death of a loved one at the end of a happy and fulfilling life can be harrowing. Trying to cope with the news that one's baby is going to die is inconceivable to those who are fortunate enough to have never experienced it.
Some parents receive this news within a few minutes of their child's birth, some in the first year, and due to the improvements in prenatal medicine and monitoring, a growing number of parents are discovering their child is going to die before they are even born.
It is easily the worst news a parent could ever hear and places upon those parents weighty decisions that none of us would ever want to contemplate. What do you do in these circumstances? Who do you turn to for support?
There are currently 55 perinatal hospice programs around the United States, and they are designed to give support to the parents of babies with a terminal diagnosis. They provide maternity support, palliative care and practical advice on funeral planning as well as ongoing support after the death of a child. Many of these stories have been shared from perinatal hospice programs.
15Little Time To Prepare
Emily Eaton and her husband John took their 4-year-old son Julian to a 10 am appointment with the doctor because of a cough he had had for three weeks. By 5 pm Julian was admitted to hospital with leukemia. They were told Julian had Childhood Acute Lymphoblastic Leukemia (ALL) which would mean up to three years of outpatient appointments and chemo.
The next day he had surgery to take a bone marrow sample, administer a spinal tap and the first dose of chemotherapy and to place a tube in his chest to administer chemo over the coming months. By the fourth day he was well enough to go home and despite the ongoing medical procedures Julian was doing well and everyone was optimistic for his recovery and for fifteen days his leukemia cells dropped but so did his healthy cells.
Two weeks after his treatment began, Julian went into sepsis and died within a matter of hours, forcing his family to go from fear to hope to grief in the space of 15 days.
14A Bucket List For Zailynn
Zailynn Mars of Wisconsin was diagnosed with a genetic disorder called spinal muscular atrophy (SMA) at the age of five months. SMA affects the motor nerve cells in the spinal cord and gradually erodes the ability to sit, eat or, eventually breathe. Following Zailynns diagnosis her family wrote her a bucket list of 51 items for her.
Thanks to the generosity of family and friends they were able to achieve many of the items on the list and made a commitment to fulfill all things with Zailynn in their hearts after she had died. The first item was for her to have her daddy walk her down the aisle which was achieved at a friends wedding when Zailynn was six months old.
A Mock prom was held complete with Zailynns prom photos. She also had a visit with Santa, had photos taken in her mom's wedding dress, and painted a picture before taking her final breath at the age of 14 months.
13A Rollercoaster Of Hope, Dispair, And Love
Lily's parents were told at her 19-week ultrasound that her legs were measuring short and that a follow-up scan would be needed. After a diagnosis of dwarfism, further scans were carried out and the diagnosis changed, Lily had Thanatophoric Dysplasia and would probably be stillborn or die shortly after birth. However, an amniocentesis showed Lily did not have TD and doctors leaned towards another similar condition Campomelic Dysplasia which was less lethal and her parents began to plan a life with their disabled daughter.
When Lily was born she was up one moment, down the next and was transferred to a nearby hospital for a definitive diagnosis. Her parents were told almost every bone in her body had broken and reset in utero or was currently broken and she had Type I Osteogenesis Imperfecta which was fatal.
Nobody was allowed to hold her for fear of causing more breaks but when it became obvious her time had come her parents were able to bathe her, rock her and read to her.
Lily died aged three weeks and her parents treasure the memories they have of their time with her.
12An Unexpected Time With Robbie
Jeanne and Steve Deibert knew that even though their baby was diagnosed with Trisomy 18, they could never consider an abortion. Instead, they worked with doctors to create a specialized birth plan. At the top was their son's name - Robbie and at the bottom was the number for the funeral home. Between these points were options for what to do if he was born breathing, what to do if he was born not breathing and what to do if his heart was not beating.
When Robbie was born, he was barely breathing, and he was given to his parents to hold while he died. They took him around to introduce him to the family gathered in the room, and when Jeanne's 92-year-old great aunt touched his foot, he had a sharp intake of breath.
The family was able to take him home where they walked him on the beach, celebrated his one-week birthday and held him until he died, aged 29 days.
11Two Short Lives Lived With Love
Amy And James Fornshell were excited to hear they were having twins but follow-up scans gave them the news first that there was only one heartbeat and then that the twins were conjoined.
Their faith told them that an abortion would be wrong and they decided to continue with the pregnancy.
That summer they met with a funeral director to make arrangements and choose a special plot to bury their daughters in. Meanwhile, they took their three older girls to choose a toy for each of them to give to the babies. They purchased two of each, one for the casket and one to keep. Mom said “Every girl needs a pretty dress and a pretty bow in her hair at least once,” and bought the girls white burial dresses, socks, and bows.
When they were born the twins Julia Marie and Isabella Grace lived for 53 minutes. In that time the extended family took hundreds of photographs, took hand and footprints and collected locks of hair.
10Comforts Found In Loss
Susanna and her husband had already experienced the devastation of a stillbirth and only just avoiding the loss of their second child in the womb. Unfortunately, heartbreak was waiting for them again, and they were told their unborn baby had Anencephaly, a fatal neural tube defect that results in the absence of a significant portion of the skull and brain.
The family and their medical team put in place a plan to ensure that if the baby were born alive, she would be kept warm and pain-free. Once they discovered she was a girl, they named her Anastasia Joy.
A photographer was booked to capture the precious moments with Anastasia Joy, and she had blankets and hats made for her. Suzanne and her husband bought memento kits to take prints and molds of their baby’s hand and footprints and arranged 4D scans so they would always be able to watch her move and smile. Every moment of her 80 minutes of life was precious, and she will always be part of her family.
9Hopes And Dreams Can Be Changed
One of the things Sara Gardner had done during the first months of her pregnancy is make a list of the things she hoped her daughter would do as she grew. However, Sarah had to give up those dreams. Baby Clara was born by cesarean after doctors started to worry about her lack of growth in utero and shortly after her birth Eden was diagnosed with Smith-Lemli-Opitz syndrome, a condition so rare only 800 people in the world are affected.
This rare genetic syndrome means a sufferer cannot produce an essential enzyme that aids in healthy growth and development. After Sara and her husband Chris had discovered their daughter was never going to grow up and develop as others, Sarah assessed what was important to them.
Instead of having a fulfilling career, riding a horse or learning ballet Sarah hoped for Clara to smile, sit up unaided, or roll over and the family's days are not full of sadness, they are full of love.
8No Child Should Die Alone
Since 2012 Cori and Mark Salchert have been adopting “hospice babies.” These children have either been given up for adoption before their terminal diagnosis or come from families who cannot cope with their child's condition.
Their first hospice baby was brought to them without even having a name. They were told she was born without the right-hand side of her brain and that there was no hope for her survival. The baby could have died abandoned and unnamed in a hospital cot, but the Salchert’s took her into their family and named her Emmalynn. This tiny little girl went from being completely alone to being immersed in love during every waking moment she lived. Emmalynn’s last breath was taken at the age of 50 days while she was being sung to and laying on Cori's chest, hearing her heartbeat.
This was the first but not the last occasion Cori and Mark prepared for the death of a child; they have done it again and again.
7A Future Of Helping Others To Honor Grace
Stephanie and Andy Schoonover created the nonprofit Carrying to Term, to help families who receive a terminal prenatal diagnosis. They made that decision after they had difficulty finding information and support when they decided to continue with the pregnancy after being told their daughter had Acrania and would not live.
They named their baby Grace and began to cram as much into every moment they had with her as they could. Friends and family were invited to her celebration of life party and photos were taken of Stephanie's growing belly. Mom and Dad selected the monogrammed blanket she would be wrapped in, the scent they would bathe her in, the nightgown she would wear. Everything they could plan to do for her they did.
At 39 weeks and 3 days Grace was born and lived for 10 hours and 32 minutes during which time she held her parent's fingers, her daddy read her two books and she was deeply, deeply loved.
6An Unknown Disorder Causes Unfathomable Pain
Theresa and her husband discovered at their 20-week scan that their son had kidney problems and his kidneys weren’t excreting urine into his amniotic fluid. This meant he did not have enough fluid to ‘breath’ in the womb, and his lungs might be underdeveloped, but doctors admitted they didn’t know exactly what was wrong and how long he might live, if at all.
Their baby boy, whom they named Andrew, was born at 38 weeks and lived for 15 days before succumbing to his mystery condition which was later called Andrews disease.
His parents were told it was probably caused by a recessive gene and that any further children would have a 25% chance of having the same condition.
After two miscarriages Andrew's sister Elizabeth was diagnosed with the same mysterious condition in utero and died during her birth. Another miscarriage followed and then baby Thomas was born and clung to life for two months before dying and being buried with his siblings.
5Giving Life To Another To Face Death
Royce Young heart-wrenching tribute to his daughter Eva quickly went viral when it was published in April. Despite having just learned their little girl was missing her frontal lobe and the top of her skull his wife Keri asked the doctor if they could donate Eva's organs if she were carried to term.
Although it was not straightforward, Eva's organs could be used for transplant and while feeling their daughter kicking in his wife's belly Royce found himself thinking of the lives that might be saved by their daughter's death.
Before Eva's scheduled cesarean delivery her heart stopped and the opportunity to donate her organs was taken from them, the second loss on top of their already unimaginable one. However, as they held their daughter's body, they were told her eyes could be transplanted, and so she was able to give a gift to someone that Royce now dreams of looking into.
4The Worst News
A seemingly trouble free pregnancy ended with an emergency caesarean when it was discovered Sarah Speake's daughter's heart rate was dangerously high. Things happened so quickly Sarah had no time to contact her husband Martin or her parents, and she was alone when Amelia was delivered, floppy, soundless, eyes closed, and in a coma.
After 48 hours of rigorous investigation, doctors were only able to say that for some unknown reason Amelia had been starved of oxygen in the womb. By the time she was ten days old she had not moved, not opened her eyes, barely fed and only breathed with a ventilator. Sarah and Martin had thought about this for ten days and knew it was time to let her go.
The devastated parents were able to spend time with their daughter in a special hospital room just for this purpose. Tubes were removed, and Amelia was dressed and wrapped in a blanket, and Sarah and Martin were able to spend Amelia's last two hours with her in peace and dignity.
3In Death As They Were Unable To Do In Life
Mary Rose Vagianos Armentrout died shortly after her birth in 2014. Her mother Dianna had been told at a routine ultrasound that there might be a problem with her baby and she was immediately offered a termination. While the doctors were giving her abortion information, Mary Rose kicked her mother for the first time, and Dianna saw that as a sign and she decided to continue with her pregnancy.
Further tests showed Mary Rose had Trisomy 18 and she could die in utero or at any point following her birth. The family lives in Virginia where state law says that anyone who dies in the hospital has to be sent to the morgue so Dianna arranged to deliver Mary Rose at home so they could spend time with her and prepare her body for the funeral themselves.
Dianna says her daughter's life and death were very peaceful and that her breathing difficulties just meant they did not know precisely when she had died.
2A Summer Of Parenting Before Birth
Amy Kuebelbeck discovered her son Gabriel had an incurable heart condition three and a half months before his birth. Instead of ending the pregnancy or beginning to grieve their baby who was destined to die Amy and her husband chose to fill their time with him in the womb, with things they had planned to introduce him to in the years following his birth.
Referred to as their summer with Gabriel, the Kuebelbeck’s took Gabriel to a baseball game, took him fishing and even had a family portrait taken, all before he was born. They also picked out his casket.
After his birth, Gabriel lived for two and a half hours and in that time he met his extended family and was held by many people who loved him. His Birth and death announcement said he was "Born perfect, except for his heart".
1Not Enough Time
Eden’s older brother was four months old when her mom and dad discovered they were expecting her. Shocked but happy was their reaction but that turned to grief when Eden was diagnosed with hydrops fetalis a condition where the baby’s body fills with fluid. Mom Lisbeth and her husband were told Eden had only a 10% chance of making it to the third trimester and if she did she would die either during or shortly after birth.
Eden's parents made every parenting decision they could to make her time with them as special as possible and looked forward to the day they could hold her, if only for a few hours before she died.
Even this opportunity was taken from them when a scan at 24 weeks showed Eden's heart had stopped. They did, however have the opportunity to hold her, have photos taken and collect hand and footprints that now hang on their bedroom wall.
Sources: FoxNews.com, DailyCamera.com, BeNotAfraid.com, today.com, DailyMail.co.uk, Catholicnewsagency.com, Newsweek.com, Choosinglifemoreabundantly.blogspot.ca, spuc.org.uk, kickscount.org.uk, fortworth.citymomsblog.com, nbcnews.com, abcnew.go.com, CleverHouseWife.com
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