Tuesday, March 31, 2015

Nathanael's Story, by His Daddy

by Steve Wickham
We Knew it Wasn't Up to Us to Terminate.
As we paused to silently share some photographs we innocuously took that fateful morning—now nine months on, the tragedy done; our son, passed—there was a sense of the surreal, yes even now. We expect that we will never really know why this happened to us, and yet we are often told we were ‘chosen’. That doesn't sit very comfortably, I can tell you. Yet, people are only trying to help.
My wife, Sarah, and I took our then 15-month-old son with us to the Ultrasound rooms. It was July 1, 2014. A day none of us will forget. Another thing we will never forget is Ethan’s concern for his Mum and Dad as we cried on our way home. It was another eighteen days before we would find out our baby’s plight—amniocentesis confirming Pallister-Killian Syndrome (PKS), an incredibly rare condition affecting the 12th chromosome.
We were told at that early stage that our baby deserved “comfort and respect.” The looks on our geneticists’ faces when we said it wasn't our place to terminate spoke loudly, yet, respectfully they didn't say a word. They honoured what was the only thing we could do. We were praying for a miracle. So many people joined us praying that God might contort the formation of our little one’s internal organs, just so the lungs had room to develop. We had faith that anything could happen, and our role was to simply be faithful to our little life inside Sarah.
During the four months between diagnosis and Nathanael’s eventual stillbirth, we took many opportunities to take him out, to enjoy his movements inside the womb, to get to know our little boy. We treasured every memory we our imaginations could create. Our obstetrician nicknamed him a “cheeky little fellow” as he would often move suddenly during the eight amnioreduction procedures Sarah had—two litres of amniotic fluid were drained each week. Nathanael had lots of character!
When the time finally came for Nathanael to be born, our one and only hope was to meet him alive. Our expectation was that he would pass away quickly in Sarah’s arms. We were devastated when he passed away due to cord prolapse because of shoulder presentation during induction. We had grieved our loss well up until this point. The day after Nathanael was born, Heartfelt came in and took precious photographs for us. That night we sobbed and sobbed with Nathanael in our arms. But we had 179 hours with our little man until we said goodbye, finally, on November 7th.

We knew it wasn’t up to us to terminate. We felt an instant confirmation of this. We never doubted our decision. We received much peace, a peace that we cannot understand, I think, because we were resolute in the first instant. We stepped into our reality afresh each day and we were given the moment’s joy, procured by a very simple bravery to do what only we could do. Does any parent do anything less for their child?
Now we know that the experience we suffered is not just for us, but also for others, just as others’ experience sometimes give us encouragement. We have such a warmth in our hearts now for those who have lost a baby. We are connected through pain, and yet we are connected as sister and brother.
Nathanael will live on in our memory, forever!

Friday, March 27, 2015

I Chose Love

Families who Carry to Birth* all have different stories to tell. Each baby is unique, and each situation has it's own set of circumstances. But there's one thing that seems to always be present: Carrying to Birth is a decision based in love. The choice to refuse termination, to stand up for the baby's value, to put effort into making the most of their very sweet little life: all of these involve a deep and relentless love that says "my baby's life may not be long, but it'll be a beautiful as I can make it, for as long as possible". 

When given the choice, Carry to Birth families say "I choose LOVE'. 

It's something any Carry to Birth family can be proud of, and hold tight to when the immense pain of grief feels unbearable. 

I chose love, and it was worth it. 

Babies who are carried to birth are always filled with this love from head to toe. Just look at any photos of these sweet little ones and you can practically see that love glowing off them. You want to know what love looks like? It's a family whose love is so strong they know saying hello and goodbye in the same day will be worth it, just to meet their precious little baby. 

From now until April 15th, 2015, All That Love Can Do is running an "I Chose Love" fundraiser to support our work of providing help and resources to families who make this brave and beautiful decision to Carry to Birth. 

women's pink
women's blue

men's pink
men's blue
If you want to tell the world, "I chose love", you can purchase one of these beautiful shirts on our Booster Campaign Page HERE.

It's a great way to support our cause, help spread awareness about Carrying to Birth, and  - most importantly - tell your baby's story.

I Chose Love: Because all life is precious, even a short one <3

Order yours today!

*Note: Carry to Birth and Carry to Term are both ways of describing the act of continuing a pregnancy after learning the baby has a life-limiting or fatal condition. Because we know 40 weeks is not always possible due to certain conditions, our preferred term is Carry to Birth.

**Thank you to All That Glitters for the design help!

Thursday, March 26, 2015

Sean's Story, by his Mama

By Sarah Hynes

I would like to share my story of my precious little boy Seán Caden Hynes who was born with something called Trisomy 18, otherwise known as Edwards Syndrome. This is the second most common syndrome in Ireland after Trisomy 21 - also known as Down Syndrome and the third most common syndrome is Trisomy 13 - also known Patau's Syndrome. 

A "Trisomy" means that the baby has an extra chromosome in some or all of the body's cells. In the case of Trisomy 18, the baby has three copies of chromosome 18. This causes many of the baby's organs to develop in an abnormal way. There are three types of Trisomy 18: Full Trisomy 18: (This is what Seán had). The extra chromosome is in every cell in the baby's body. This is by far the most common type of Trisomy 18. Partial Trisomy 18:The child has only part of an extra chromosome 18. That extra part may be attached to another chromosome in the egg or sperm (called a translocation). This type of Trisomy 18 is very rare. Mosaic Trisomy 18: The extra chromosome 18 is only in some of the baby's cells. This form of Trisomy 18 is also rare. 

Our story began on the 31st of March 2014, the day of our 20 week scan. We were attending the Rotunda Hospital in Dublin and were so excited to see our little bundle on the big screen. The nurse called us in to the scan room and began. We could see him wriggling around and kicking away and thought everything was fine until.....she stopped the scan, turned to us and said, 'we have a problem here, something doesn't look right with your baby and I think we need a second opinion'. She explained to us that there seemed to be some problems with our baby's heart and brain, and asked us to come back in the following day to see the doctor. That's literally all I remember from that day, I got up off the bed in tears and ran out of the hospital as fast as I could, we were in complete shock, this was not the news we were expecting to hear.

The following day we returned to meet with the medical team and discuss what was going to happen, we decided to have a special test called an amniocentesis done, that would confirm the diagnosis in a few days and then the doctors could 'fix' our baby, or at least that's what we thought. Having this test is the only regret I have from this whole experience. Looking back now I dont think we were given the chance to think about it properly, I felt very rushed in to it and also pushed in to having it done. 

Two days passed, we were living an absolute nightmare, not knowing what was wrong with our precious little bundle, and then we got the phone call that would change our lives forever. First we were told were having a boy, then the diagnosis - Trisomy 18, Edwards Syndrome.... and it was fatal. We had never heard of Edwards Syndrome before this. I have never felt pain like it in my life, to hear words like that, how do you even begin to take in the news that your precious little baby was sick, that there was no cure and that he was going to die???? I didnt want to listen, I just couldn't take it in, how could this have happened?? Was it something I did wrong, was it my fault?? Turns out it was nothing to do with myself or my husband, it was a 'fluke of nature'! 

Regardless of the diagnosis we knew that we wanted to give Seán the best possible chance of life, we did everything in our power to keep him safe and warm in there until he decided it was time to make an appearance. Doctors explained to us the risks of continuing on with the pregnancy, that we may never get to meet Seán alive. Unfortunately many babies with Trisomy 18 pass away in the womb early on in the pregnancy, there was also a risk of stillbirth, but we just wanted to give him the best possible chance to meet his family, his big sisters, aunts, uncles, cousins and grandparents. 

The next four months were probably the hardest days of my life, not knowing what was going to happen, trying to continue on as normal, it was torture. But Seán was a little fighter and made it all the way till the end, he was due August 11th and arrived on August 9th, breathing on his own and alive! We got our wish, we got to meet our little boy alive, he got to meet his family, and knew nothing but love for those 2 wonderful days. 

On August 11th at 2pm Seán grew his angel wings. I will never forget that day as long as Iive, a piece of me died that day with him, a piece I will never get back until the day we meet again. Our world just fell apart. Life can be so cruel, so unfair, why us, what did we ever do to deserve this??? But Seán has made us the proudest parents in the world, he has made us better people and for that we are forever grateful. 

I wanted to share this with whoever takes the time to read it, for anyone going through a similar situation, know that you are not alone and there is always someone there to talk. I made a promise to my angel that his memory will live on forever and that he will always be talked about everyday. Loosing Seán has been the hardest thing we have ever dealt with. Unfortunately this condition is more common than you would think, but a lot of people know nothing about it. So I have decided to share my story in the hope that it helps some other parent of a Trisomy child. 

Thanks for reading and remembering our beautiful boy Seán Caden Hynes, born @ 7.58pm, 09/08/14, weighing 5lbs 3ozs. 

Sleep tight little angel, love you to the moon and back xxxx

Tuesday, March 24, 2015

The Nightmare of Childloss

by Jenna Gassew

I lost my son October 9, 2014 just four short hours after his birth. That day was filled with mixed emotions. It’s one of those days where I experienced the absolute best and the absolute worst of all moments in my life. I never knew I could have so much hate and love for one simple date, but I do. When I think about the days leading up to delivery sweet memories come to mind. We had family over to celebrate with a cake for Shane’s 39 week mark, and had spent most of that weekend at Linvilla Orchards (our favorite pumpkin patch). We enjoyed every second we had with our little boy. Through labor and delivery I was surrounded by family and friends who were all excited for me to meet my little miracle, and when I did I can tell you he was - and always will be - perfect. His sweet eyes looked right at me and that’s when I knew it was all worth it, even the goodbye. 

Those four precious hours will always be the greatest four hours of my life and I am so thankful that we were able to have him for every single second he gave us. Shane Michael Haley was born into a family who loved him and always will.

After Shane had passed I held him with me for 27 more hours making sure he was cared for and held with the utmost respect. We had family and friends meet our little boy, as well as taking many pictures. I remember I didn't want to waste any time I had holding him, so I tried staying up for most of those 27 hours and I did. I remember Dan’s uncle had stopped over and I had just sat down to take a nap holding my Shane and when he left I think I started to nap. I remember having a dream of my Shane holding him while family and friends gathered round and then in an instant someone had said to me he’s gone and then I remember being woken up by my dad and Dan telling me it’s just a dream. I woke up looked at my son in my arms and thought this is no dream he really did pass. My heart felt so cheated that it couldn't just be a nightmare and I couldn't just wake up from it. I then stayed up the rest of the time I had with Shane until I had to give him over to the funeral director, and that was a living nightmare in itself.

When I went home the next couple days people stopped over to keep us company. We finished up things for his funeral and made it through arguably the toughest days. As time moved on I had a couple friends tell me they had Shane visit them in their dreams. I loved hearing anything about Shane. I loved just being able to hear his name. I thought maybe he will visit me in my dreams soon, but he never did. All I had was that one “nightmare” in the hospital as I held his sweet little body. Until a couple days ago; I had my second dream of Shane.

I was holding him and he was still with us and he smiled. I had yelled at Dan to hurry and capture his picture and he tried but he couldn't get the picture in time. Then someone had said "he’s gone" and I woke to Dan saying,” Jenn, it’s just a dream.” I was crying, and muttered out, “This is no nightmare, this is real, we lost Shane.”

You know that moment you get after a nightmare where you catch your breath and realize it’s just a dream? Those moments where you look around and can see everything is alright? I don’t have those anymore. These past five and a half months have been anything but easy and are my own living nightmare. Some days I wish I could sit back and think it’s all just a dream but I can’t, I’m stuck in a nightmare and there is no way out.  

Losing a child is a pain that I would never wish on anyone but it is also something no one can fully understand unless they went through it themselves. I wish more than anything I could hold my sweet Shane and just tell him I love him one more time. For now, I just pray for comfort and peace and that our sweet Shane continues to watch over us. I pray no  one ever has to be stuck in this nightmare, and if they are I hope they know they are not alone.

~ ~ ~
Jenna Gassew is from outside Philadelphia, Pennsylvania. She is a graduate of Rosemont College with a degree in Mathematics. She is the mother to a beautiful little boy in heaven, Shane Michael Haley. Shane was diagnosed with Anencephaly at 13 weeks gestation. Jenna and Shane’s father, Dan, decided to create a bucket-list on which they took Shane to various places such as Phillies games, New York City, and Ocean City, Maryland. Shane was born October 9, 2014 and lived for four precious hours where he spent his whole life loved. She continues to bring awareness to Anencephaly in honor of her son. More about Jenna, Dan, and Shane’s journey can be found on  their face book page, “Prayers for Shane.”

Thursday, March 19, 2015

Serenity's Story, by her Mama

Written by Nicole Fox

She was perfect. Looking at her you would never guess anything was wrong with her. She had jet black hair, porcelain doll skin. She had all her little fingers and toes. She was so innocent and beautiful. 

Then why did doctors say she was “incompatible with life”? This is something I will still never understand. 

At 12 weeks gestation our lives changed forever. We went in for a regular ultrasound to find out our little baby had something wrong. The Dr just said "there is a rare sack around your baby" and left us with that

Then sent us to a specialist, in a different city. We did blood tests because our baby had something called cystic hygroma. Waited for the results for about 5 days and the results came back our baby had Trisomy 18 aka Edwards syndrome. They sent me back to my regular ob to go over the blood tests. When the Dr walked in he started giving me prices of abortions saying basically that was my only option. I had already researched Trisomy 18 before I showed up to my appointment. So I had to cut him short I said "sir abortion isn’t an option I am carrying this baby as long as I can". He then laughed at me saying “you know your baby won’t be pretty”. I couldn't believe what I had heard come out of his mouth. I just shook my head at him and said well this is my baby and will be beautiful to me. He didn’t even tell me if my baby was a boy or a girl I had to ask for my paper work and look it up myself. 

Well, we were having a little girl!

From that day forward our lives were completely different. Each week the Doctors said I would lose my daughter by the next week and I wasn’t going to carry her to term.

We came up with her name naming her Serenity Hope. Meaning peacefully never giving up. Serenity was already a fighter and began to prove so many people wrong. At 19 weeks we learned Serenity had a very bad heart defect called HLHS. Her left side of her heart didn’t work. I wanted to do a full intervention when she was born but with her heart no one was willing to do surgery. There wasn’t a case where any Dr opted to do surgery on a trisomy 18 baby with hlhs it was just impossible to find anyone willing to help. So we started making a care plan for comfort care. We didn’t want Serenity to suffer but feel all our love. Still Doctors said I was definitely not going to carry her to full term especially now with her heart defect. My ob referred my daughter as the “trisomy baby" and not by her name. She stated many times she wouldn’t give me a c section because my "trisomy baby" was going to die anyway. Serenity was breech and I wanted to do anything so I can spend some time with her. The hospital in my home town was nasty. Around 29 weeks I was bleeding so I rushed to the hospital. I had already registered so I thought they were all on board.

Well that was an understatement. They treated me so badly making it seem I was lying about her diagnosis and I was just a drug addict. I left the hospital in tears I did not want to have my daughter in place where they weren't going to care for me or her. I had to change hospitals. I called my specialist in the other city to see what he can do for me. He switched me to a wonderful caring team who actually seemed very interested in Serenity and I. The Dr actually called her by her name. I even met with the whole NICU staff and they were all for my care plan and even said we could possibly do an intervention if they tested her and she didn’t have HLHS. 

In the meantime we loved and did so much with our girl. We got maternity pictures done twice. We took her to the Denver Zoo, a Broncos game, a zombie walk. Serenity had a busy life. She was spoiled with love and food. Ha-ha my girl loved cakes and Pepsi. She already had such a personality she kicked when she didn’t like something and would kick when she did. I played music for her and we had our own songs.

Matt Hammit's All Of Me was our favorite. Also she was a fan of Tupac….man this child. We had a shower and played games and even had a butterfly cake made for her. I was already 38 weeks so we set a date to induce. They were amazed on how strong my little girl actually was. We set a date around 40 weeks to go have her. Her heartbeat was so strong so we thought everything was okay. We went in the evening to start the prep of inducing. We first did an ultrasound to see if she was breech and she was so Dr scheduled a c section the fallowing morning. 

It was time to hook me up to all the machines. They hooked me up to the machines but we sadly couldn’t find her heartbeat. We tried for about 40 minutes but there was not one. They did another ultrasound and our angels fight had stopped. I was in shock I couldn’t believe it. She just had a heartbeat that morning and it was at 150. I thought I still felt her moving. I have to say that was the longest night of my life. I didn’t sleep. I was amazed though because she did something no one thought she would she made it to TERM. I had her September 15, 2014 three days shy of 40 weeks.

She was beautiful and born peacefully sleeping. She was 4 lbs 7 oz, and full of love. She was an angel I got to love and hold an angel. 

The hospital was so awesome and let me spend three beautiful days with Serenity. We took lots of pictures and cherished every second we had. I am going to leave this as a death of a child definitely changes everything you thought was going to be. 6 months later and I grieve every second of every day. Serenity’s dad and I no longer speak. And he was my middle school sweet heart. Death changes a person. I have seen him maybe a handful of times since her funeral. I know we all grieve different but it has torn us apart. Family I once talked to on a daily basis we don’t speak anymore and it kills me. I never thought my life would be where it is at now. My life is forever changed. 

All I know is I won’t ever stop loving my daughter - may I add she was our first baby. I will keep her memory alive until the day I die. 

Thanks for letting me share Serenity’s Journey. March is Trisomy awareness month so please go blue for Serenity Hope and on March 18 I wore purple in her honor.

Tuesday, March 17, 2015

The Price of a Swimsuit

By Bethany Conkel

It was a typical hot and humid summer here in Ohio. I was well into my pregnancy and I was starting to get big. We had already received the news that our baby had a terminal diagnosis months prior when I was just 11 weeks pregnant, and we were bound and determined to make the most of our baby’s life. We had created a bucket list of activities to do with our baby and were trying to enjoy things as much as possible.

One evening my mother-in-law invited me to go shopping at the outlet malls with her and some friends. I thought this sounded like a fun idea. It was right in line with our bucket-list of activities, so I agreed. As I waddled through the sticky outdoor mall area we came to the store Motherhood. Yes, Motherhood, that dreaded store for those of us CTT (carrying to term after a terminal diagnosis). The store that celebrates pregnancy and babies with the utmost excitement. The store with the joyful sales people who know all the right questions to ask… you know, the ones us CTT moms try to avoid like the plague. I stared at the store for a moment and realized the sad truth. I was gonna have to go in. My heart sank a little, but the fact was a much, much, much needed maternity swimsuit was being held hostage inside that store. I had desperately wanted to go swimming, and I knew I didn't have too many other options if I passed on the dreaded Motherhood store. So I mustered up the courage and my mother-in-law and I walked into the store. I looked at a few options, avoiding help from any sales people, and quickly selected a swimsuit that I thought would work well. It had a nice fit, and was flattering to my ever growing belly. Plus it was on sale – even better!

At this point, I was pretty excited. I found what I wanted, was going to get a good deal, and we had been able to avoid the sales people. NO QUESTIONS for this momma! One last hurdle remained: the checkout counter. The checkout counter for a CTT momma, regardless of the store, is a tricky place, but more so in a store like Motherhood. You have to be sure to control the small talk at the checkout counter and steer it in the right direction or you are inevitably going to hear well wishes, happy comments, or be asked a million questions about your pregnancy. Upon approaching the counter I quickly took control of the situation and things were going surprisingly well. The clerk had already rung up my order and I had money in hand ready to pay. Then she asked me for my e-mail address; trying to rush the process, I spurted it out and thought “I’ll give you just about anything if we can finish and I can get the heck out of here...” Then I heard my mother-in-law’s voice ask a question. I instantly left my thought and zoned back in on the conversation.

“Umm, ma’am. Will they be sending her e-mails and things after the baby is born?”

“Ohhh, YES! We send out all sorts of great deals and coupons with our e-mail program.”

“Oh. Well, she doesn’t want that… Can you just remove her from the list?”

“The deals are realllly great! Trust me she doesn’t want to miss out on this.”

“We don’t really come here that often, if you could just remove her from the list that would be great.”

At this point the gravity of my error was hitting me in the face full force. In my rush to get out of the store I mistakenly set myself up for months of misery after I deliver in the form of pregnancy e-mails, mommy deals, and joyful junk that I would never be able to use. Grreeeaaaaat! I had been so close to achieving victory and fell flat right at the finish line.

At this point I don’t remember what the kind lady was saying… it was something like, “blah, blah, blah our e-mail program is awesome….”

I glanced over at my mother-in-law who was starting to become frazzled, but desperately determined to fix the situation yet she didn't know what to say.

Then, before I could stop it… it came out –

“My baby is going to DIE! I don’t need the e-mails because I won’t be bringing my baby home!”

HORROR immediately filled the kind lady’s face. Then panic. Her fingers flew to the keyboard and she frantically tried to remove my name from “the list”. After a moment she stuttered, “I already hit submit and I don’t know how to undo it.” Then poor lady just melted and started to sob. She asked me a few questions about the pregnancy and our situation in-between her sobs. I mentally pulled out my pre-memorized script that I had created for situations like these and I calmly explained our situation and told her what was wrong with our baby.

Next thing I know, the sobbing sales lady left her area behind the checkout counter and came around to the front. She threw her arms around me and held me in a tight bear hug… and sobbed some more on my shoulder. I was officially stuck! There was nothing else I could do except pat her on the back and reassure her that everything was going to be alright. As I did this I remember looking over the lady’s shoulder just in time to see my mother-in-law RUNNING for the door. After what seemed like FOREVER the sweet sales lady released me from her hug and stepped back, wiping the last tears from her eyes. She then said a few nice cliché sentences. Something like, “You are so brave. What an inspiration,” and “I’ll be keeping you in my thoughts and prayers,” (for my CTT mommas out there: yes, it is okay to think “YOU DON”T EVEN KNOW ME”, and “Why am I the one comforting YOU?” – but it is best not to actually say this….). I mumbled a thank you and made sure she was alright. Then she said she would talk to the manager and see if she could get my name removed from “the list”.

Finally I was able to turn and waddle out of the store. After the door to Motherhood closed behind me, I took a deep breath of the surprisingly wonderful hot and sticky Ohio air. Humidity never felt so good!

Technically, I had been victorious for I held in my hand the much, much, much needed swimsuit… but instead of feeling the thrill of victory, I felt the agony of defeat. What was close to being the perfect CTT shopping trip, quickly won a place in the hall of fame for All Time WORST. Never in my CTT journey had I brought a sales person to tears so quickly!

During the ride home my mother-in-law teased me about making the nice lady cry. To this day we still chuckle when we think about that trip. 

But, in all seriousness folks, the journey of CTT is filled with unexpected turns. Sometimes you will be comforted by strangers, other times you will have to do the comforting. Sometimes you will have a plan and it will fall to pieces right in front of you. Sometimes you will find yourself laughing at awkward situations or events, other times they will leave you in a puddle of tears. All these things are part of the journey. Be gentle with yourself, there is no manual or how to book on how to walk this journey. It is a day-to-day, moment-by-moment, do-the-best-you-can experience.

~ ~ ~

Add caption
Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries.

Monday, March 16, 2015

Reuben's Story, by His Mama

Written by Meran Byleveld 

My husband and I were married in January 2014. We knew we wanted to start a family, and were thrilled to learn at the beginning of April that we were expecting a baby, due December 17th. We had seen our baby at our dating scan and were excited about our twelve week scan, as we wanted to see our baby again. We were enthralled by the tiny baby wiggling and moving around on the ultrasound monitor. The ultrasound technician, however, didn't seem to share our joy. He informed us that there was something wrong. 

During the scan, he had identified a large cystic hygroma on the back of the baby's neck. He had also noted a two-vessel umbilical cord. The technician was very solemn as he informed us that we had a high risk pregnancy. He wasn't able to give us the statistics yet, but we needed to contact our doctor as soon as possible.

The next afternoon, I went to see my GP while my husband was at work. She told me that we had a 1:4 chance of Trisomy 21, 1:6 of Trisomy 18 and 1:6 of Trisomy 13. My husband and I were devastated, but contacted our families, friends and church family, asking them to pray. At thirteen weeks, I had an appointment with a specialist obstetrician. After reviewing our results and completing an ultrasound, he informed us that he could be wrong but he believed our baby had Turner Syndrome and would die of heart failure within the subsequent five weeks. He even went as far as to phone an anaesthetist to organize "the procedure" to remove the baby once he or she was dead - while I was sitting shell shocked in his office. He also recommended that we undergo further testing, as we had told him quite emphatically that we were not willing to end the pregnancy. My husband, Rob, and I had already discussed amniocentesis and CVS testing, and I had told him that I was not willing to do anything that would risk harming our child, so he stood with me as we refused to undergo testing. 

Further ultrasounds showed a lot of fluid build-up under our baby's skin, issues with the abdominal organs and the amniotic sac beginning to come away from my uterus wall. There was also the possibility of a missing nasal bone. We continued to keep people updated and continued to pray for our child, believing that God has the power to heal, if it is His will. 

At seventeen weeks and five days, I went for my latest ultrasound. The obstetrician informed me that he couldn't find a heartbeat and that my baby had died. I was devastated, and in a state of disbelief, I returned to his clinic the following day for another ultrasound, "just in case" he had been wrong. The second ultrasound confirmed my worst fears - my baby's life was over. 

On Friday, I checked into the maternity ward of the hospital so that labour could be induced. I insisted that another ultrasound be carried out, so that I knew with an absolute certainty that my baby was definitely gone. Again, there was no heartbeat so with my own heart breaking, I allowed the obstetrician to induce my labour.

The following morning, Saturday 19th July 2014, eighteen weeks and three days into my pregnancy, and fifteen hours after being induced, my son Reuben Christopher Byleveld entered the world silently. There was no one in the room except Rob and I as our tiny baby boy was born. There were complications from the birth - over three hours later, the placenta still had not been delivered and had to be manually removed as I was sobbing with the pain. After the placenta was gone, I began to bleed heavily and lost more than a litre of blood. I spent five hours on an intravenous drip which failed to stop the bleeding, and ended up in surgery that night to prevent me from bleeding to death, and to remove the remaining pieces of placenta. In the meantime, we had two opportunities to hold Reuben. 

He was a tiny 200 grams and 16cm long. 

Reuben's teddy bear from the hospital, his bracelet and his hand and footprints.
We found out after Reuben's postmortem examination that he didn't have Turner Syndrome at all, but suffered from Trisomy 21 - Down Syndrome. 

We still miss Reuben every day and don't understand why we couldn't keep our precious son, but we are leaning on God's everlasting arms to have the strength to get through every day.

Releasing balloons on Reuben's due date.

Friday, March 13, 2015

On Gianna's First Birthday

Happy first heavenly birthday Gianna Marie
I must have written and rewritten this five times in anticipation for this day. As I sit here and try to reflect on my grief journey to date, I wonder how I made it. I go through phases of missing holding her little body so bad to periods of feeling so undoubtedly grateful for the impact she's made in our life. Both ring true, grief has been both a blessing and a curse. Grieving the loss of your child has a way of breaking you down into tiny little pieces and expecting you to pick it all back up. In that first year, are you really able to build yourself up again? 
Everyone is different, but for me, I'm still building and believe I will build for the rest of my life.
It's hard to say who I am now after our loss. Sometimes, I'm not sure who this new person is. But I'll tell you what I do know about myself;
I am a mother. A bereaved mother who has to be prepared at any moment for grief to strike.
I am grateful. I am eternally grateful that I was picked to carry our little dark haired girl for such a short time here on earth and forever in my heart.
I am vulnerable and broken. I now wear my heart on my sleeve every time I share about our daughter. Surprisingly, she comes up more than you would think in my every day life and I am all too happy to say her name, but am met with mixed reactions.
I have a weak yet strong heart. Yes, I could cry at the drop of a hat and someone could unknowingly (or unfortunately, purposely) trigger me, but I've held it together many more times during this first year than I give myself credit for. Moments I could have (and should have) lost it and Gianna kept me sane.
I am loved. By so many. Our supporters and fellow bereaved moms and dads got us through. They are my earth angels
I am a wife. A wife to my best friend and my daughter's daddy. There's no way to explain how deep our bond goes, especially after this monumental loss. All I can say is, we are one.
I am hopeful. So hopeful for brighter days and I know they are just around the corner.
My baby girl has made me a better person and created a fire in me, a passion, to stand by other bereaved parents. To help where I can and just 'be there' when there's nothing to say. She's given me so much insight on what truly matters in this world and not to sweat the small stuff because truly, so many previous strifes of mine are now so minuscule and insignificant.
She's shown us how many incredible people we have in our lives who will love her forever along with us and that's truly all we could ever ask for. For our sweet angel to be remembered and loved forever.
She is a miracle

Happy first heavenly birthday my sweet Gianna and thank you for all the gifts you've given your daddy and I this first year. I love you.
~ ~ ~
Christine Russo is a wife to an amazing, supportive husband, and a mommy to Angel Gianna Marie, her first child. She carried Gianna after receiving a fatal diagnosis halfway into her pregnancy. Through the love and spirit of their special daughter, who means the world to them, they wish to help support other families who have to say goodbye to a piece of their heart.

Wednesday, March 11, 2015

Clodagh's Story, by her Mama

written by Derbhille McGill

I was pregnant with my 8th child. We were so happy! Everything went the same as the previous ones: the sickness, tiredness, the putting on weight, even the cravings -strawberries I couldn't get enough of them - until I went for my twenty week scan. 

January 2007 my life as I new it would change forever.

My husband and I went along to our 20 week scan expecting to find out what we were going to have. Unfortunately we discovered our little girl's brain had not developed right, with parts missing. We were told to come back in two days to meet with consultant, where he then picked up her cleft lip and palate. He referred us to the royal hospital abnormalities clinic, where they also picked up her heart defects. It was suggested to us that things looked really grim, and did we want to know exactly what the condition was by the means of an amnio test? We declined due to the risk of miscarriage. We spoke with a doctor he told us that because there were a cluster of abnormalities it was most likely down to chromosomes...it wasn't just one thing wrong it was as least three they new of. We didn't really understand. We were in shock, total devastation.

My pregnancy continued and my baby continued to grow inside. I was being scanned every two weeks but looking back now I realized I was being scanned just to see if she was still alive as doctors had said to me babies like this rarely make it to term.

She made it to term!

I was induced and after a beautiful almost painless 3 hour labour our precious little girl was born weighing 7lb.

Once born we could see also she had an extra finger on each hand and low ears, but she was born alive and that's all that mattered to me! I thought she is here but disabled I will cope with that. 

When she was a day old they took her and did tests. The doctor spoke with my husband and I and told us she had a syndrome called patue's also known as trismony 13. I don't think I was really taking in what he was saying until I heard him say she is incompatible with life. I realized at that moment my beautiful little girl was going to die and my world came crashing in round me. The doctor said she wouldn't grow and she would just be like a little flower and wither away in a couple of days. All I thought was if my baby is going to die I'm taking her home to die there with all her family. 

Arrangements were put in place and eventfully she came home to all her brothers and sisters where we spent the rest of her 33 days of life with her. Those days we had with her are the most precious memories we as a family have. We were able to get pictures, videos, and actually get on as near normal as we could for the other children, even though we knew each hour could be her last with us. Every other night my husband and I took turns to sleep so she would never be left alone. 

Eventually, on a Friday, our beautiful little girl, laying in the arms of her daddy, gently passed away. Our beautiful little girl and sister is gone but the joy and love she brought to our family is still here. She is loved as much now as she was then. There's not a day goes by but someone mentions her name .

Our beautiful little Clodagh Tréisé forever loved and never forgotten.

Friday, March 6, 2015

You Are Not Alone

by Heather Kimble

You are pregnant. You may have a wide range of feelings like excitement, fear, love etc. This baby may have been planned or a surprise. Regardless of your individual personal feelings and how much planning went into having a baby, you are here and adjusting to this new exciting journey. There are so many resources, groups, and others moms that are right in front of you just waiting to help and offer support through your pregnancy. 

Sometimes you want the advice and other times you would rather just find out on your own.  But in the end the simple fact remains that support is everywhere and you don’t need to go too far to find it. 

But then it happens. You hear the words that you never expected to hear, your baby is "incompatible with life". Right away the doctor suggests termination, because even if your baby is born alive they will only live for a few moments, a few hours, or - by a miracle -days. You’re in shock. You keep telling yourself this cannot be happening. In this fog of shock and denial you are not told that there is a whole community of support for choosing to keep your baby as long as you physically can. 

Suddenly, all of the resources, groups, and other moms start to back away. The support you had when it was thought you were having a healthy baby is nowhere to be found. You are left alone. You have no idea what to do next. Where do I go from here? You feel utterly alone and lost. 

I want you to know that you are not alone. There are still resources, groups, and other moms who are here to offer you support and love. I know that the support is not out in the open and I am so sorry for that, but please do not give up; you do not have to go through this alone.  There is a small close group of moms and dads, within the baby loss community, that chose to carry their precious babies for as long as they could with nothing but love.  You are free to share your story, fears, hopes, dreams, ask questions, vent, share resources you found, show off your beautiful baby, and so much more!

I am personally forever grateful for the community of women who also carried their babies after receiving a fatal diagnosis.  We have each experienced hearing the words, “incompatible with life,” but still our individual journeys are different and unique in many ways.  

Please take advantage of the All That Love Can Do website. Take time to go through the various blog posts, resources (more below), and private facebook groups. Samuel's mama has done such a beautiful job putting together such an amazing resource and safe haven for our community. 

We all chose life for our precious babies, no matter how short of time or whether any of that time was spent outside the womb or not. We treasure each moment forever.

You are not alone. 

~ ~ ~

Heather Kimble lives in the Philadelphia area. She is married to her best friend, Jason and is mommy to Hannah Sue Kimble. Hannah is her only child. Heather carried Hannah after receiving a fatal diagnosis and was told to terminate. Heather was told to terminate based on the serious risk to her own personal health. She doesn't believe in termination and chose to carry Hannah with love. Hannah passed away and was born sleeping on December 23rd, 2013. Heather and Jason treasure every moment they had with Hannah during pregnancy and after delivery. Hannah has inspired a nonprofit started by her parents to help others and to help break the silence by sharing their journey of baby loss. Visit her blog, Hannah's Heart and Love, and follow her page on Facebook

Here are some resources I personally used:



Wednesday, March 4, 2015

What I Wish I Would Have Done

by Alex Hopper

This isn’t something I have wanted to write about, or even think about for that matter. To think back to such a trying time, and to think of things I wish I had done, is so so sad, because those are wishes that will forever stay unfulfilled. My son died, and all the “if-onlys” will forever stay undone. But there are others who are still carrying their sweet children. And though their children will not live, they are still living at this moment. For them, there is still time, even if it is far too short. So I will write this, for them, so that maybe my regrets won’t have to be regrets for them.

I wish I would have talked to him more. I know that he could hear my voice, and I know that he knew my love, but I wish I would have said more. I wish I would have told him all the things I was thinking and feeling. All the things that I would not have the chance to say, by not getting to see him grow up: “We’re so proud of you”, “You’re such a big boy”, “We love you”, “Happy Birthday, Son”. 

I wish I would have sung to him. Lullabies, my favorite songs, “Happy Birthday”.  

I wish I would have rocked him to sleep. I know I couldn’t physically, but I wish I would have sat in his room at night, and rocked him peacefully in the dark. 

I wish I would have read to him. The Bible, cards we were sent, my favorite books as a child: Jamberry, Good Night Moon, Love you forever. 

I wish I would have taken more pictures. We started taking pictures as soon as we knew we were pregnant, but after the diagnosis, it was so hard to continue doing those “normal” pregnancy things. It was hard to smile for a picture, knowing the future. 

I wish we had gotten a lock of his hair when he was born. Just to have that physical reminder, that he was real. 

I wish we had gotten casts made of his hands and feet. To have his likeness in 3D is something I will always yearn for. 

While there are many things I wish I would have done, there are so many more things that I am thankful we did. I would encourage anyone who is currently in this unimaginable situation (carrying your child with a fatal diagnosis), to consider doing some of these things. And this is extremely personal. What worked for me may or may not work for you. But the point is, though it may seem impossible, try to cherish the short time you have.

I am thankful that we shared our son with others. It seemed impossible to share our happy news, being so unsure of our son’s fate, but we did. I am so glad we were open about our situation and our struggles. By doing so, it allowed our son to touch so many lives. It also provided a lot of support while we were pregnant. 

I am thankful we still had a gender reveal party and baby showers. Though it was extremely difficult, our son’s life deserved to be celebrated. It gave others a chance to love on us and our son, and we are forever grateful for that. 

I am thankful we took maternity pictures. I never really had a chance to share the photos, but having them is such a treasure for me. Those are some of the few photos of the three of us all together. 

I am thankful that we planned and decorated his nursery. It might seem like having an empty nursery with no baby to bring home would make things more difficult. But here’s the thing, the most difficult thing is having no baby to bring home. Any other things or reminders can’t add to or take away from that fact. Losing a child is terrible, period. But, for us, having a nursery for him validates his life. That room, no matter what it is in the future, will always be his room first. 

I am thankful that after he was born, we dressed him, held him, and shared him with others. I am also eternally grateful to NILMDTS (Now I Lay Me Down To Sleep) for coming and taking tons of pictures for us. We will always treasure those photos. 

Lastly, I am so thankful we chose to carry our son. We fought for his life and gave him every chance possible at life. 

During my pregnancy, I was constantly torn between knowing my son would die, but knowing that, for the moment, he was still with us. I am so thankful for the amount of time we had with him, knowing that he could have easily passed months sooner. I am so thankful for the time we had with him once he was born. 1 hour and 9 minutes of pure love. And though we should have had so much more time together, I will never forget those 231 days he was alive. I won’t lie; this will be the most difficult thing you’ve ever faced. But I can assure you your child’s life, no matter how brief, is worth it.
~ ~ ~

Alex Hopper is a writer in North Carolina. She is married to her beloved, Trent, and mommy to her angel, Cyrus. Cyrus was diagnosis with a fatal birth defect in the womb at 12 weeks. He was carried with love until he was born at 33 weeks on November 25, 2013. He lived for 1 hour and 9 minutes. His life was short, but his legacy lives on.
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