The Morris Family - A Family of Five.
Dawson Morris age 9
Brother of Drew Morris
Since my brother, Drew, has been in Heaven, I have been very sad and happy, too. I think of him a lot. At Christmas, we read him a story and hung up a stocking for him. Also, we hung a wreath at the cemetery for him. I did a power point at school and I mentioned him as my brother. His birthday is April 1st and we are going to get the basement done at our house by then. For his birthday, I want to do something fun. Mom says we may release balloons.
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Dylan Morris age 12
Brother of Drew Morris
Since Drew was born and passed away, we have done many things to honor him, including talking at Bowties for Babies and visiting Alexandra’s House several times. On Christmas Eve of last year, my brother, Dawson, and I read to him. We also each bought him a little gift for the only Christmas we got to spend with him. This year we visited his stone and hung a wreath right by it, so he could look down on us and see it. Our little cousin, Gavon, even brought him a couple of books for Christmas gifts. It was hard having a Christmas without him and it seems funny because we have not even known Drew for two years, but I can’t remember life without him. Now it is nearing this little miracle’s first birthday. Last year on his day of birth, it was a beautiful 80-degree day, and he passed away after two hours and twenty-two minutes of life. It was the happiest and saddest day of my life but I definitely don’t regret it.
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Note: Dylan and Dawson wanted to do something’ fun’ in honor of Drew’s first anniversary. One of our other families Bob and Staci Courter recently started a new program in honor of their two baby girls who died of an inherited disease. Mallory Hope and Julia Faith Courter inspired their program called Project Fun with Hope and Faith. Knowing how much time families spend planning for and collecting memories of their babies’ births and deaths, they want to help the family create new and happy memories, yet always in honor of the siblings who have died. Dylan and Dawson were the first recipients of this gift from Bob and Staci’s family.
Brandon and Lindsey Carlson Family
We wanted to send these thoughts on our precious Caden from big brother Connor and big sister Kylee:
"When I held him in my arms, he felt light, but I knew his Spirit was in heaven with God."
"I remember Caden with my bear, Carl."
"I felt sad knowing that Caden wouldn't be here with us, but am happy knowing that Caden is living a happy life in heaven." -Connor Carlson, Age 9
"When I held him in my arms, I knew that he had light in heaven."
"I remember Caden with my bear Sparkles and with the (memory) garden outside."
"Caden's body was sick, but his heart was so strong."-Kylee Carlson, Age 7
As you know, the kids' experience with creating bears in memory of Caden sparked the creation of Caden's Cubs (http://www.cadenscubs.com) We have attached a picture of Connor and Kylee with their bears along with a photo of our newest blessing, Hadley. We have also attached a picture of artwork that Kylee created at school when she was asked to draw a picture of her favorite tree. She drew the tree we have planted out in Caden's garden with the quote "This is my favorite tree because....it stands for my baby brother. And it is old.".
Thank you for this opportunity!
With Love,
The Carlsons
Ben and Christy Shively Family
(These are thoughts the children wrote before Baby Ian was born)
Dear Ian,
I know you have problems and we pray for you at dinner. People have been bringing food to the house because mom can't. I love you Ian. Mom has told us all about your problems and Ian, I felt you kick. I like to give my mom's belly kisses. Can you feel them? I can't wait for you to be born. That's all for today. Love, Olivia
Dear Ian,
I am sorry for your conditions. We are praying for you. I love you. I hope you get to meet us when you are born. If you live for a long time, Tyler would be your best bud. I love you. I'm your biggest sister. You might be going to a soccer game of mine if you are well enough. We are thinking of you a lot. When you go up to heaven, can you tell me what it's like? I'll listen in my heart when you tell me. Look for Toby, Smokey, and Moose when you go up to heaven. They are some pretty cool dogs. That's all I have to say today. I'll write more another time.
Love, Samantha
ps-my nickname is Sam
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Dear Ian,
It's your sister Lucy here. I love you. I want to give you a hug and a kiss when you are born. You will be my baby brother. I want to be with you when you are sick. And that's it now.
Love, Lucy
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Ian’s birthday
Ian’s Day: July 7, 2010 according to Samantha (10)
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“I remember going to the sonogram and looking at him on the screen. I wasn’t sure why we were crying. I was trying to help Lucy to understand that Ian didn’t have a heartbeat. Later that night, I came home from an event and my Aunt Lou Lou was over. She took us to the hospital to meet Ian. I was able to hold him and he was baptized in my arms. I was sad and happy because Ian was going to live a better life in heaven rather than struggling on earth. If it weren’t for Ian, we wouldn’t know what it felt like to have someone die close to us. I remember seeing one eye open a little bit. He had blue eyes like me. There was a drop of holy water on his eyelid. Ian was really small. Patti from Alexandra’s House was there, taking pictures. Now we can look at those pictures. A couple weeks later, we had a Mass and a balloon launch for Ian. There were balloons with his name on them. After letting them go, I felt kind of sad but happy because I wrote him a note but I knew he would get the note in heaven. We planted a tree in is honor and wrapped our palms from church on the trunk. I like to see his tree everyday so that I am reminded that he his always with us in our hearts. At night when I see one big star and one little star, I know it’s my baby brother and my uncle watching over us. I sometimes wonder if he has other little friends to run around and play with up in heaven.”
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Ian’s Day: July 7, 2010 according to Olivia (9)
“I remember the day Ian died. We were watching Ian on the screen at the sonogram and then he didn’t have a heartbeat. We were all crying because it was sad that he wasn’t alive. We went to the hospital late at night with my Aunt so that we could hold him. I remember holding my baby brother and wearing the scrubs like my Dad was wearing when Ian was born. He was such a beautiful baby. Fr. Farnan baptized Ian in my sister’s arms. We were all around him and it was so nice. I really liked that we lifted balloons off to him in heaven. All of our friends and family were there. I pray to Ian when I need his help. I will miss him.”
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Ian’s Day: July 7, 2010 according to Lucy (5)
“I remember everyone crying when we went to see him on the computer. I was sad because Mommy was sad. I remember holding my sweet baby brother but he wasn’t alive. My sisters got to hold him too. Mommy was really sleepy but she was covered up with blankets. I like that we planted his tree because I can sit on the bench next to it and think about him. I feel my brother hugging me when I am warm and cozy in my bed at night. I love him.”
(Editor’s note: Kim and John’s first born is the delightful Gabriel. We met them when their second son was diagnosed prenatally with a fatal birth defect. Zachary did not survive. Several years later they conceived a beautiful baby girl and the pregnancy was advancing normally. Unexpectedly their perfectly formed Isabella was stillborn. Recently Kim and John received a new baby into their family through adoption. He is Lucas and these are their reflections with Gabriel.)
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We've been extremely busy. Lucas is very adorable and very demanding! What five month old isn't! Anyway, Gabriel is totally in love with his new brother. The first thing Gabriel does in the morning is to kiss Lucas. He constantly wants to hold him and has even shared his "baby" toys with him.
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This past March before going to bed, I told Gabriel that it was his sister Isabella's birthday. I had questioned whether to say anything or not. I wasn't sure how he would react. We talked about how old she would be now and what we thought she would like; playing dolls, dress up, etc. After the conversation it was time for bed. Gabriel was saying his prayers and said, "God, please tell Isabella I said happy birthday."
Lucas has been a blessing! He fits in our family so well. Our adoption isn't finalized yet, (another month) but it's hard for us to believe that he ever had other parents. I asked Lucas the other day if he was born for us and I got the biggest smile! That's all the answer I will ever need!
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I asked Gabriel if there was anything he would like to say and he said, "I like Lucas and he likes me, and if Zachary and Isabella were here they would like me and I would like them too!" Well said!! HA!
Kim
Brooklyn Musyoki
In November of 2009, my husband Eric and I found out that we were expecting another bundle of joy. We have a son, Brennen, who at the time was approaching his 1st birthday. We were so excited about our new edition. I spent a lot of time in the doctor's office because I was constantly bleeding and no one could really tell me why. At 17 weeks I went in for a normal check up and my doctor decided to do a sonogram. During the sonogram my husband and I found that we were having a baby girl, we also found out that I had a incompetent cervix and would need to have an emergency cerclage placed to keep my cervix closed. After the surgery I was placed on bed rest for the remainder of my pregnancy. The only time I could leave the house was to go to my doctor's appointments every Monday.
After being on bed rest for 6 weeks, I went to my regular Monday doctor's visit and my doctor told me that my cervix was continuing to shorten and that she wanted me to admit myself into the hospital on Thursday so that they could monitor me. On Thursday March 25th I admitted myself into The University of kansas Hospital. On Friday March 26, 2010 at 8:30 a.m. my water broke and I immediately went into labor. They were not able to remove the cerclage so I had to have an emergency cesarean section. Brooklyn Mwikali Musyoki was born at 1:07 p.m., she weighed in at 1 lb 6 oz. and 12.5 inches long, I was 24 weeks and 2 days. The doctor's and nurses worked on our little angel for 20 minutes, reviving her a total of three times, my husband never left her side. It was concluded that our daughter passed away from a Pseudomonas infection.
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We decided to have Brooklyn cremated and held a small memorial service for her. Every year for her birthday we have dinner and release balloons with our loved ones. She truly is a blessing. Her short presence in our lives have made us take a look at the things that are important in life. I truly believe that everything happens for a reason. God always knows best and He will never put more on us than we can bear. Brooklyn will always hold a special place in our hearts. I thank God for giving me the time that He gave me with Brooklyn and the time that He continues to give me with Brennen.
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The pain of losing Brooklyn seemed overwhelming at times. Some days I didn't want to get out of bed and I struggled with really bad anxiety. I was so angry and I felt so alone. I started attending meetings at Alexandra's House about 2 months after losing Brooklyn. It took me a while to really address my feelings but when I did I felt so much better. It's such a wonderful feeling to talk to people who can relate to your feelings. Alexandra's House has played a huge role in my healing. Our faith, our family and our friends have all been a great comfort to us and we will be forever grateful to them all.
She never opened her eyes but I already knew her eyes sparkled like the night sky. Sophia, born an angel, that God already needed. Her life lasted only a few hours but changed by life forever. Only the best die young. Sophia deserved the life that she will never be able to experience but we will life through her. She made the biggest impact on my life even though she'll never know it.
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My mom has four kids; Sophia would have been her fifth. On the phone with her boyfriend (the father of Dante, my little brother who's 7), she expresses to him that she may be pregnant again. She asks me, "Do you know if we have a pregnancy test?" I said, "I'm not sure, why?" She replied, "I think I might be pregnant." After looking for a pregnancy test and realizing we didn't have one, she ran to the store to buy one. Moments later, she took the test and came back with the news. "I'm pregnant", she said. I didn't know how to feel at the time. I was mad because she already had four kids, upset because I felt it wasn't the time and happy because there'd be another baby on the way. I wasn't sure how my other siblings were going to take it. Last time my mom was pregnant with Dante' and told my brother Gage(age 21), he was completely distraught and didn't know how to handle it; I didn't know what he would say or think about another baby. After a while, everyone seemed okay with it, and excitedly awaited the baby.
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I went to one of the ultrasounds with my mom to hear the heartbeat and see what the baby looked like. Nervous and excited all at the same time, I awaited the doctor to call out my mom's name. Finally, the doctor said, "Miechelle?" We got up and followed the doctor back to the ultrasound room. The doctor started the ultrasound and began looking for the heartbeat. She searched and searched for the heartbeat, I tried to comfort my mom with a reassuring smile but I felt just as nervous as her. After some time, she finally found the heartbeat but it was dim, a bit of relief lifted off our shoulders. The doctor said that the amniotic fluid was low and to drink plenty of fluids and get some bed rest. My mom nodded with acceptance and in her mind I knew she felt terrified but she put on a pleasant smile and sat up.
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Throughout the following months, things took a turn for the worst. My mom fllowed the doctor's orders and stuck to her bed rest and drank plenty of fluids. It almost felt like my mom went to the hospital almost every other day because of her heavy bleeding. Every time she returned home, she would say, "The doctor told me to stay on bed rest." Days later she'd be right back in the hospital with the same problem. We weren't sure what was quite wrong yet. Finally, the doctor told my mom that the baby had Potter's Syndrome, a fatal disease that caused the baby to be born without kidneys or even have room to have kidneys. Commonly the baby would have deformities to the face or to the body. The doctor told my mom that Sophia wasn't going to make it after the birth. If anything, the baby would survive for moments after the birth and then she'd pass away. My mom had no idea how to take this news, crying hysterically all the time; no one knew what to say to make her feel better.
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The night of the birth, my mom experienced the same heavy bleeding, so when she left for the hospital, nobody knew we'd get a call saying, "I'm in labor, come to the hospital." My mom and I both agreed that I would be in the room when Sophia was born but once we got there, the doctor told me I couldn't because of a C-Section and I had to be 18 to be in the room. MY brother Gage went into the room with my mom, expecting the worst but praying for the best. Sitting in the waiting room, trying to keep my little brother and sister(Madison,11) calm, only made my nerves worse. My heart began to race and I stared at the clock, bouncing my legs up and down anxiously. Finally, Gage walked out with the saddest face on and told us to come with him. He had tears in his eyes and I already knew what to expect. I walked in the room hesitantly, not sure what to think of how to feel. My mom full of tears handed Sophia to me so I could hold her. I just looked at Sophia's face and began to cry, just knowing that her life was about to come to an end. The most beautiful baby girl I had ever seen in my life, just lying in my arms. After the doctor told us that she may have some deformities, I expected the worst and almost afraid to see her but she was incredibly beautiful. She looked like every other normal baby, just a little smaller but I can't even express the true beauty I saw in her. I only held her for a short period before I just couldn't handle the pain anymore. I hugged my brother and we just cried hysterically. Dante', Madison, Hasana (Gage's girlfriend), and I all walked back to the car just distraught from taking in what had just happened. Nobody talked the whole way home because no one knew what to say.
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Sophia survived longer than the doctors predicted. She pushed through and lived for 2 hours. I never thought that something so tiny could have such a large impact on me. In a heartbeat, I would have traded places with her just to let her have a chance to live her life. Sophia brought our family closer than we've ever been before. She taught me to take nothing for granted and your family is the only thing that matters because when you're at your lowest, they're going to be there to pick you back up.
Addison Paige
My husband and I found out that I was pregnant on August 8, 2008. We were excited, although a bit reserved since I had suffered an early miscarriage three months prior. My OB was wonderful and basically held my hand in terms of doing what it took to calm my nerves. We hit the 12-week mark and decided to tell friends and family that we were expecting, thinking that we were out of the woods for anything to go wrong. We found out that we were having a daughter and prepared for her arrival accordingly. We went to several Baby “101” courses at the hospital to better prepare us for parenthood. We also picked out a name, Addison Paige Clabaugh, which we were waiting to reveal to everyone after her arrival, a decision that I regret. I had a textbook pregnancy with no indication (that I was aware of) of any potential issues that could put my baby in danger. I was so excited for her arrival and looking very forward to the baby shower that my family was throwing for me. Little did I know that the day of that baby shower, March 7, 2009, would be the day that I would be going into the hospital to start the process of inducing labor and delivering my lifeless baby girl.
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I remember waking up the morning of Friday, March 6, 2009, having not awoken that night by the usual punches and kicks of Addison. I really didn’t think much of it because she was extremely hyperactive the day before. I just chalked it up to her being tired, not knowing at the time that babies have a very scheduled sleep cycle in the womb. I also remember feeling different that morning in terms of how I was carrying her. My stomach was a bit harder than usual and had a heavy feeling …kind of a weighed down feeling. I brushed it off and went to work that morning in a chipper mood thinking that my birthday would be in three months and by then Addison would be here with us. I went to work and ate my breakfast thinking that would get her moving, but when that didn’t do the trick, I decided to call my OB even though I felt like a burden for doing so. Let me preface this by saying that I had been in to see my OB for a routine weekly OB visit that Monday and I was seen the day before because I was leaking fluid. They wanted to rule out amniotic fluid, so they worked me in. I didn’t see my regular OB that day and often wondered if things would have turned out differently had I gone to the satellite office to see her instead. I have since stopped playing the what-if game just because I knew that nothing good would come from it. The nurse said to head to L&D right away so they could do an NST to reassure me that everything was ok. I honestly had no idea that something was wrong. To make a long story short, I went to L&D only to find out that our daughter had returned to heaven. I was alone at the time (with the exception of the nurse) thinking that there was no need to call my husband as I would be in and out and there was no need to worry him (another decision that I regret). March 6, 2009, was the day that has forever changed my life, my way of thinking and who I am right down to the core of my soul.
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Addison was born March 9, 2009. She was perfect and beautiful. She had died as a result of a nuchal cord accident. I had never heard of this happening and certainly was never made aware that it could happen to me, nor of the extreme importance of kick counts and/or any unusual behavior, such as hyperactivity or frequent hiccups, as being an indicator of a potential cord issue. There isn’t a day that goes by where I don’t think of her and miss her. But, I know she is sitting in the lap of God surrounded by angels and Joy and that along with the fact that I will one day get to see her again brings me peace.
Addison’s little brother, Evan Bryce Clabaugh, was born into this world 14 months later. He was and is healthy, although a failed Bio Physical Profile bumped him up on schedule for a cesarean section that day. He was born with the cord around his neck and his leg, though not tightly I am told. Regardless, something was wrong to result in a failed BPP, and I believe it had everything to do with the cord. After Addison’s passing, I did a lot of research on stillbirth, including flying to see a stillborn research specialist, Dr. Jason Collins, when I was 28 weeks along in my pregnancy with Evan. I knew that I had to be Evan’s advocate and help ensure his well being (to the best of my ability). My wonderful OB (the same that delivered Addi), a perinate and Dr. Collins were all very much involved in monitoring Evan. Their help, along with the support of my family, my friends (the few that truly understood), other angel moms, my church and my faith are what got me through the very long nine months of extreme paranoia, fear and sleepless nights. I was a statistic and nothing that anybody said could have made me feel better.
Evan is the light of my life, and I can’t imagine life without him. I know now what a miracle it is for any baby to arrive into this world safe and sound. I thank God for Evan and believe that he is a gift and a blessing. Evan’s arrival, God’s grace, and time have helped heal my heart to the best of its ability. I have met several angel moms on my journey and we continue to share, vent and lean on one another for support and continue adapting to what we call our new reality. We are part of the dreaded club that nobody wants to be associated with, and we are desperate to help ourselves, our families, and others who have experienced and potentially could experience the loss of a baby. We want to be heard and understood. We want to make certain that our babies’ deaths were not in vain and carry out their legacy by sharing what we know and not holding it within like a dirty secret. In my opinion, sharing is a key component of the healing process. To anyone who has lost a baby, I give my deepest condolences. To anyone still struggling from this, please know that happiness does return to your life. I look back at what I call the darkest days of mine and recall how hopeless I felt and how grim I perceived the future to be. I never believed that I would have the strength and courage to get to where I am now in life. Stay strong by leaning on your faith, your family and your friends to help you through those dark days.
To commemorate my daughter and give purpose to her life, I initiated discussions with St. Joseph Hospital (since that is where both Addison and Evan were born) about starting an annual perinatal bereavement ceremony. I feel it is so important for moms to connect with other moms as a way of coping and healing and feel like this ceremony provides an opportunity to do that in addition to acknowledging our angel babies. With the help of other angel moms, we have created a Facebook page called The Angel Baby Project which is another great resource for moms, dads, grandparents, siblings, aunts, uncles and anyone who has experienced infant loss. I am excited to announce that The Angel Baby Project of Greater KC along with St. Joseph and St. Mary’s Medical Centers will host the first annual Perinatal Bereavement Ceremony in April 2012 on the St. Joseph campus. Please follow The Angel Baby Project on Facebook to learn more about upcoming event details at: http://www.facebook.com/TheAngelBabiesProject
Do you want to go to prom with me?” That was the question Michael, my now husband, asked me when he was a junior and I was a sophomore at a tiny Missouri high school. We knew each other before then but this was the start of something new. We started talking more. We ate at Applebee’s and went to the movie theater on our first date. Soon we were boyfriend and girlfriend, and even though we went to different colleges, we stayed together and got married after my graduation. After spending many years together as “just us,” we decided it was time to think about having a child. We did not stress about it but thought, when it was time, it would happen. I figured within a year or so we would have a baby.
Five months later, after a Friday morning doctor’s appointment because I was feeling weird, I made my way to work. I decided to grab an early lunch while I was already out. I was almost to Panera Bread when I got a got a call from my doctor’s office. "It sounds like you're driving," my doctor told me. "Let me know when you've pulled over or parked so I can go on and tell you about the results of your blood work." With my heart thumping, I quickly parked and told her to go on. She tenderly told me that my blood test showed I was pregnant but might be having a miscarriage because my hormone levels were low. Since it was Friday I would need to wait and get my blood taken again on Monday to see if my hormones had increased or decreased, and thus show if I was still pregnant or not. I quietly thanked her for getting my blood work evaluated quickly, and then I hung up.
As I sat in silence in my car, it felt like the wind had been knocked out of me. Then the tears came. The big sloppy tears that run down your face and onto your shirt while you try to catch your breath. I felt like I was living in a movie. This could not be my life. Shaking, I called Michael and could barely get the words out. "I'm probably having a miscarriage," I finally managed to spit out through sobs. "I have to wait until Monday to find out for sure." Shocked, Michael comforted me and asked if he needed to leave work and come pick me up. Trying my best to stay strong and positive, I said no. After a few more “I love you’s” we hung up and I sat, dumbfounded. I didn’t know how to react so I just went through my day which was a blur. I remember my head throbbing, my eyes stinging and my heart pounding. At 5 o’clock I headed to my hometown for my nephew’s birthday party. I cried and prayed during the hour drive, taking comfort in knowing that no matter what, God was in control.
What unfolded was the longest weekend of my life. That Sunday was technically my first Mother's Day. As I celebrated my wonderful mom, mother-in-law, sisters, grandma and aunt, I wasn't sure what was going on in my body or the life of our first child. At church, when the pastor asked all of the mothers to stand up, I was stuck in my seat, feeling like I was betraying my first child as I continued sitting in the pew. For the hour they spoke about and honored motherhood, I tried my best to discreetly wipe away my hot tears which were smudging my vision and rolling down my cheeks.
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Megan Fordham's Story
My name is Megan Fordham. I am 11 years old, and I am the oldest in my family. My youngest sister is named Noelle. She is 3 ½ years old. My middle sister’s name is Mallory. She was stillborn when she was 32 weeks old. She had a form of dwarfism, and doctors told my parents that she would not be able to live after she was born. There are many kinds of dwarfism, and since I was only 6 at the time, I did not really understand that there were kinds you could die from. I kind of knew a little bit of what was going on. I remember everyone being sad after they went to the doctor visits. Mom and dad told me what was going on. I had been really excited to finally have a baby brother or sister. It was no fun being an only child. I had been very lonely all by myself. Mallory’s birthday is December 06, 2007. The first year after she was born, we got a balloon for each one of us, and we let them go on that day. It was a dark cloudy day, and we watched them go all the way up into the sky. We sent them to her. We still celebrate her birthday every year. Last year, I got to pick out the cupcakes for our family celebration. I chose some with Christmas lights on them, since she was born so close to the holiday. We go to visit the cemetery a few times a year. We bring flowers. It is sad for us. We have some very nice pictures of Mallory all over the house. It is nice to be able to see her, and know she is still part of the family, even though she is in Heaven. I am glad mom and dad hung them up. I know I can always talk about her, and she is not a secret. Someday, when Noelle is big enough, I will tell her all about her other sister, who watches over us, but is not with us here on Earth. I am glad I have Noelle, and I am glad we had Mallory too.
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Megan Fordham, Age 11
Parents: Amy & Byron Fordham
Sometimes I still have that innate instinct to care for McCoy. In the ordinary moments, my mind alerts me that I should be doing something. And I am reminded that it is done. Every need was met. And my hands feel idle.
Grief continues in waves. It all seems surreal and then all too real in the next moment.
The numbness. The anger. The denial. And then the acceptance.
And the incompleteness that is my life. HE is missing.
Never to be replaced. Like, how do we move forward without HIM? But we do.
And in the moving forward there is awkwardness. An uncharted territory. It isn't every day that someone tells you of their dead child.
Just... say his name.
McCoy will always be my son. He will always exist in my life. He will never NOT be on my mind. He lived. He died. And that is okay. It does hurt. The grief is sometimes unbearable. But you know what makes me feel better? Saying his name. It feels like he is still here. The memory of his life is living. Talking of the times we had together is healing. Remembering details is therapeutic.
Ask me how we chose his name.
Ask me what color his eyes were. What color his hair was.
Ask me what type of temperament he had as a newborn.
Ask me about his diagnosis.
Ask me about HIM.
Just... say his name. For in his name, there is JOY.
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--More about McCoy's story can be found at the blog https://saramuskopf.wixsite.com/mccoysstory
Miriam Kuhn's Story
A Short Encounter with God’s Miracle
On July twenty sixth of two thousand we took our first look at Miriam Ann as we had a routine ultrasound. She was sixteen weeks. I remember being nervous even though I had no real evidence that anything was wrong. The technician said she wanted to bring something to our attention. She did not say exactly what was wrong other than the amount of fluid in the baby’s abdomen was abnormal. She sent us over to the doctor’s office where the doctor conferred that it was a worrisome situation. The doctor personally called us in from the packed waiting room to meet with her in her office and immediately sent us to a group of perinatal specialists for more conclusive work.
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On the first visit there, the doctor said that we should do an amniocentesis on the baby to check the chromosomes and relieve fluid pressure. My husband John and I were unsure what to do. After considering the procedure for a few minutes alone between us, we decided to consent in the hope that it would help her. Initially, they thought that she was a boy due to the nature of the problem that she had.
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During one of our early visits, one of the doctors stated that we should just terminate the pregnancy. We told her that we decided earlier that this was not going to be an option. She stated that we could call back if we changed our minds, and that we are just “emotional” now. This appalled us. For days we tried to process the news. Someone at my old church recommended that we contact Dr. Eugene Pearce who was deeply interested in preserving fetal life even when incompatible with life. He was very encouraging and allowed us to discuss the situation with him with no obligation. He recommended that I call Alexandra’s House, a completely new type of hospice organization that specializes in pregnancy crisis situations like ours.
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I was up late one night around eleven o’clock and decided to call and expected to talk to a message machine. To my surprise, Patti Lewis, the homes founder and house mother answered the phone and was so amazing and comforting to talk with. No one until then could really relate to me on such a personal level over such a shocking situation. I just remember hanging up the phone and feeling an exceptional peace that really helped soothe my deeply wounded heart.
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By Mommy Amy Fordham
Two years. Not a long time, in the scheme of time. However, in our family’s world, it feels like 50 years, sometimes 100. You see, two years ago today is when we found out there was a good chance that our unborn child would not live.
We were in for our 19-week ultrasound. After years of infertility, we were so excited, as was our 6 ½ year old Megan. She wanted a sister, and to be honest, I want another girl. Byron wanted a boy, of course, but all we really wanted was a healthy baby. God had another plan.
We had one of the last appointments of the day. I was very well acquainted with the ultrasound room at my doctor’s office - nothing romantic in the way we got pregnant! The ultrasound tech looked and looked. Of course, the usual, ”I think it is a girl (YAY!) but I am not 100% sure.” Then silence. More quiet, and more measuring, and quiet. Then, ”I will go get the doctor. Be right back”. That is never good. The doctor came in. More quiet. Argh.
I was so not feeling the way I was supposed to. I was supposed to be laughing and joking, and HAPPY it was a girl! I was nervous, scared and freaking out inside. My mom was there. It was Friday, Sept.7, 2007. I will never forget that day, and I hate it now always. The doctor mentioned that the baby’s legs and arms were not quite up to the 19 - week mark, about 1.5 weeks off. I did not think too much of it. Ultrasounds are not 100% right. She wanted me to see a perinatologist.
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Nigel's Story
I found out I was pregnant on Mothers Day, Sunday, May 10 th , 2009. My husband and I
were very happy and surprised that it happened so easily. A week later I went in to see
the midwife – at that time I was only 5 or 6 weeks pregnant. Everything was fine.
I made a follow up appointment for a month later.
At that appointment (11 weeks) the midwife had trouble locating a heartbeat so she
ordered a sonogram to see it. The sonogram technician looked and immediately left the
room and got the midwife to come in. They both were troubled because the baby was
alive, but had a larger than normal fluid filled sac on the back of its neck. The midwife
told us, it might be nothing – but they wanted to order a level 2 sonogram at the hospital
right away to get a better look. She explained that sonograms are usually given this early
and that it could happen in lots of kids and we just don’t usually see it, because they don’t
usually do sonos so early. We were not too concerned.
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The next day we went to the hospital and our lives changed. The sonogram technician
confirmed it was a cystic hygroma which is often seen in little girls. The perinatologist,
came in and very coldly gave us about a 33-50% chance that the hygroma will dissolve and
absorb in and that the baby would be completely normal. Even if the sack disappears as it's suppose to - the doctor indicated there is an underlying reason it happened. He said the chance that the child will die in uteruo are pretty high. He indicated if I made it to 20 weeks that would be really good. He also said I may not know the child died until my next sonogram. The chances are elevated that if she does make it, she's going have significant challenges. He said many people choose to terminate their pregnancy at this point as the outlook is not favorable.
They offered to do an amnio to see if bad genetics showed up. We told him we would
not be terminating the pregnancy no matter what, so we would not need the amnio. We
decided we would wait and see what was to unfold. The baby was so tiny we felt with a
50% chance everything could be okay, that God could heal the child and give us a
miracle. I remember one of the first things that went thru my mind as the doctor was
telling us this – was a testimony I had heard at MOPS the year before. A girl told us
about her very difficult pregnancy and how the doctors said she too should abort because
her daughter’s liver was on the outside of her body and it shouldn’t have been by that
point. I remember this girl saying that she and her family prayed and prayed for that liver
to move in exactly where it needed to be. Then whenever it was she went back for a
follow up appt – it had moved and was just as they had prayed for. She said the doctors
were baffled and said it was a miracle as there could be no scientific explanation for it. I
felt strongly we could have a miracle too.
My husband and I were in shock. But we knew that our child’s future was out of our
hands and God was in control. So we made a choice and went to the church and prayed
with Greg Townsend the campus pastor. That was something that was out of character
for us. It felt uncomfortable at first. I think now, in retrospect that was the first step or
choice of faith we took in this journey. I just recently red the book, the Purpose Driven
Life and love how it says – Obedience unlocks God’s power. God waits for you to act
first. Don’t wait to feel powerful or confident. Move ahead in your weakness, doing the
right thing in spite of your fears or feelings. This is how you cooperate with the Holy
Spirit, and how it develops your character.
Joseph's Story
By his Mommy Rebecca Gurera
(Joseph was to die at birth yet celebrated his first birthday January 7, 2006 –Editor’s note.)
At our 20 - week sonogram (September 2004) we found out that there was a serious problem - Joseph had an "unbalanced translocation of chromosomes". He had Trisomy 7 and Monosomy 3. After consulting with several specialists - we were informed that his survival rate was VERY low! Most suspected that I would not even carry him to term. So we began to do lots of research, which confirmed most of what they were telling us, and we began to focus on our faith, our family and how to prepare for the death of a child. We went through all of the feelings one can imagine: denial, anger, sadness, guilt and eventually acceptance. We realized that God had a purpose for us and more importantly for Joseph.
However...the months went on and Joseph was still thriving in utero...now what!? We wanted to be optimistic but yet we didn't want to get our hopes up that the doctors were wrong. We wanted to keep ourselves prepared for the worst! So we just prayed everyday for God's will and that he would grant us acceptance either way.
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So time continued on and Joseph continued to grow at a steady rate (still three weeks smaller than he was supposed to be but no additional loss) until mid -December when we went in and they said that he had had no growth since he previous sonogram one week earlier. So they thought that this was the beginning of his demise and they set an induction date of December 28th. (We decided to wait a week because we wanted to be able to enjoy Christmas with our girls before facing the passing of our son.) We went back for one more sonogram before they induced us and realized that he was still growing and not showing any signs of stress so we choose to wait a little longer to give him the best chance possible "IF" he did survive. So we re-set the induction date to January 10th.
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Well Joseph had his own agenda and decided to come into the world on his own terms January 7th, 2005 at 9:02 pm. It was the scariest yet most glorious moment anyone could imagine and our lives have been blessed every since that moment. Has there been heartache? Yes. Do we wish he didn't have to fight everyday for another? Yes. Are we scared of what is to come? Yes. Would we change a thing? No way!
He is our son. He is our light. He is our reason.
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Miracles do happen and he is our living proof!
Tatum's Story
By Mommy, Brenda Spurlock
April 2008
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Being 42 and the mother of six did not alter my longing for another baby. My husband agreed and soon enough we found out we were expecting.
It was not easy from the very beginning. Just 5 weeks into my pregnancy we were in the hospital undergoing tests for an ectopic (pregnancy). I was having extreme pain and no fetus was found in the uterus, or in the tubes, which led the doctor to believe that it was in the abdomen. We were on pins and needles, and I was broken hearted, for days. After repeated ultrasounds, they ultimately found the fetus in the uterus, but it was behind in growth. I expected to lose the pregnancy, but it hung on. And yet, something was different; I just didn't feel "right". I had experienced severe emesis with my prior "successful" pregnancies, and though I had extreme nausea, I was concerned that I wasn't vomiting. I had asked for testing, but my OB felt everything was fine. Finally, I made it past the first trimester and though my mind should have been much more at ease, I was constantly troubled.
At my 18th week, we had an AFP done, due to my advanced maternal age and prior pregnancy failures. The AFP came back with a 1:25 for Trisomy 18. We were heartbroken. Twelve years earlier, with our 5th child, we had received a faulty AFP and Triple Serum Screening, so we knew the test could be wrong. But the results were confirmed with a Level II ultrasound, performed by an experienced Perinatologist.
We were told our baby was a girl and asked how that would fit into the family picture. We were thrilled...we had all been praying for a little girl. And then the silence fell on the room as the sonographer began to find one anomaly after another. The perinatologist came in and completed the ultrasound and then explained that we had six "soft markers" that confirmed that the baby had Trisomy 18. He asked us if we wanted an amniocentesis, which would give us a better than 99% accurate answer as to an exact diagnosis. I refused, saying that I did not want to do anything to risk the pregnancy or harm the baby.
Our 18-week-old "fetus", our dreams, our children's baby sister, and our infant daughter...her prognosis was that she suffered from a chromosomal disorder that was 100% fatal, according to the doctor. I sobbed, my husband went into denial, and life became a roller coaster for us. The "facts" were that the ultrasound showed that Tatum had a large VSD (hole in the ventricles of her heart), flattened facial features, clenched fists, an Arnold-Chiari malformation (spinal stuff), a large posterior encephalocele (bubble on the back of her head-possibly containing brain tissue), and I had polyhydramnios (excess amniotic fluid). I got on the Internet and began researching everything I could about Trisomy 18 and about her individual anomalies, and it wasn't good news. The doctor was right, Trisomy 18 is fatal...right down to the 100% fatal part. Tatum's anomalies were more severe than many of the cases that we could find. So, for the small percentage of babies that survive for a short amount of time, they do not have the severity of defects that Tatum had.
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The Eye of the Storm
Our hearts were brimming with excitement the day of our 20 week anatomy scan. It's such a fun sneak peek at your little bundle of joy. To our delight we learned that we were having a BOY and he looked so perfect to us! He was a little mover and shaker in my belly.
All seemed well, until the scan results came back unfavorable. There were many things flagged on our scan. Our beautiful baby had bilateral choroid plexus cysts in his brain, he kept his hands clenched, and the umbilical cord had 2 vessels not the normal 3 vessels; but, there was hope. Alone none of these things necessarily meant anything detrimental, but what we learned between the first scan and the second scan, a specialty scan, is that together these things could paint a rather dark picture which could possibly mean Trisomy 18, a chromosomal disorder where there are 3 copies of the 18 chromosome.
Our second scan sent us to a third scan, a fetal heart specialist, and the bad news just kept swirling around us. The 2 weeks between the first and third scan were filled with fears, episodes of bursting tears, prayers, hope, and faith. The not knowing was the absolute worst. It was a true emotional storm.
In summation this is what we are now facing with our sweet baby:
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Bilateral Choroid Plexus Cysts
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Two vessel umblical cord
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Clenched fists
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High-Risk for Trisomy 18
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Only 1 visible kidney
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Possible heterotaxy
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FOUR major congenital heart defects
I'll never forget the words of our Fetal Heart Specialist. She said to us while handing us an image of a newborn heart, "Here is an image of a normal newborn heart. I have a library of stock images of congenital heart defects, but there isn't one for your baby's heart. Your baby's heart is so "special" that I'm going to have to draw on this one."
Those are really hard words to let sink in. All the data points to a very short time with our son, if we even make it through a full term birth. The doctors weren't able to give us any expectations. It is all too variable, except for what he has is not life sustaining. At this point you might be thinking that this is where the eye of the storm hit, knocking us flat on our heiney's. Actually, it was the very opposite. After that appointment, my husband and I had a peace come over us. We very surely understood that we are standing in the "miracle zone". We know that God is bigger than this, and we are standing in a great and child like faith that God will heal our baby.
We know all that lies before us, and what it might mean, but like the women in the bible who reached out to touch Jesus' garment for healing, and the centurion that said," just say the word Lord", we are standing in faith. We are loving up our little baby, praising Jesus for the miracle of today with him, and rejoicing in every little kick we feel. We are praying for a miracle for our son, and asking everyone to pray with us. This is all we can do. The rest is in God's hands.
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https://www.caringbridge.org/visit/gabrielagiftoffaith/journal/view/id/633c60b0015fdf4f3eae73fc
The Story of Matilda Hope
Our journey with Alexandra’s House began 12 years ago. We were pregnant with our 3rd child. I had a sense that something was not right from the very beginning. I was told it was all in my head many times. On our 19 week ultrasound, we were told that our child was “incompatible with life”. At that time we only knew that the baby had severe fetal hydrops that was causing the rest of her internal organs not to form correctly. At this point it was recommended that we end the pregnancy. I was lost in those moments, brain spinning through every scenario, how I was going to tell my other kiddos, friends family and such. I was disconnected and not in the right mind to make any decisions. We went home and found out the next day that I was pregnant with a little girl with Turner Syndrome. Those were the details that broke me, she was real, this was real and I had no idea how to navigate this.
Somehow a friend of a friend contacted me and gave me Patti’s contact information. We scheduled an appointment to see her the next day. As we drove it was so weird to feel comfort on this drive, I was honestly excited to talk to someone who had been through this with others, someone who could help us. Oh my did we need some help. All we had heard from anyone is that they were sorry. I understand that, but I was not sorry, I was scared. We already loved her and we were not sad she existed, sad she was going to leave us so soon. At that point I felt no one understood. As we set down with Patti she was like a conduit of God’s love and peace. She allowed us to ask questions, she gave us so much information about others experiences and scripture. We felt like we finally had the support we needed to make it through this. To also make this journey a blessing to us, our children, our family and anyone else who heard about her story. After this meeting she/her became Mathilda Hope. 6 weeks later after surviving 5.5 weeks longer than doctors predicted she went to heaven and I had a complicated delivery of a 2 pound 5 ounce baby girl. I held her for 8 hours, we baptized her and Patti was there through it all. We then had a celebration of life a couple weeks later. Her life was short but so very important.
Fast forward 9 months later we became foster/adoptive parents. It was something we wanted to do since we were teenagers but fear kept us from taking the leap. Mathilda gave us strength and faith to move forward. After a couple placements, Luella, became our first forever kiddo. She was followed by a sibling group of three, more fosters in between, 2 more teenage girls, another sibling group of three and our last was born just a few months ago making it 13, a baker’s dozen.
The journey was full of complications, drama, and impressive chaos but Mathilda was a piece of the journey that found beautiful moments in the hardest places. Many of girls chose Hope as their middle name in honor of her, my kids all celebrate her birthday and throughout the year do acts of kindness or service in honor of her.
She has shown us the power of our lives. How we can impact people all around us, how sometimes small things make the biggest ripples. We thank Alexandra’s House for helping us make the choices that were best for our family and the support for the last 12 years to continue making Mathilda matter and our journey to continue helping others expand.