A Letter From Heaven
To my dearest family, some things I'd like to say.
But first of all, to let you know, that I arrived okay.
I'm writing this from heaven. Here I dwell with God above.
Here, there's no more tears of sadness; Here is just eternal love.
Please do not be unhappy just because I'm out of sight.
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through.
God picked me up and hugged me and He said, "I welcome you."
"It's good to have you back again, you were missed while you were gone.
As for your dearest family, They'll be here later on.
I need you here so badly, you are part of my plan.
There is so much that we can do, to help our mortal man."
God gave me a list of things, that he wished for me to do.
And foremost on the list, was to watch and care for you.
And when you lie in bed at night the day's chores put to flight.
God and I are closest to you.... in the middle of the night.
When you think of my life on earth, and all those loving years.
Because you are only human, they are bound to bring you tears.
But do not be afraid to cry; it does relieve the pain.
Remember there would be no flowers, unless there was some rain.
I wish that I could tell you all that God has planned.
If I were to tell you, you wouldn't understand.
But one thing is for certain, though my life on earth is over.
I'm closer to you now, than I ever was before.
There are rocky roads ahead of you and many hills to climb;
But together we can do it by taking one day at a time.
It was always my philosophy and I'd like it for you too;
That as you give unto the world, the world will give to you.
If you can help somebody who is in sorrow and pain;
Then you can say to God at night...."My day was not in vain.
And now I am contented... that my life was worthwhile.
Knowing as I passed along the way I made somebody smile."
So if you meet somebody who is sad and low;
Just lend a hand to pick them up, as on your way you go.
When you're walking down the street and you've got me on your mind;
I'm walking in your footsteps only half a step behind.
And when it's time for you to go.... from that body to be free.
Remember you're not going.... you're coming here with me.
Monday, 28 November 2011
Thursday, 24 November 2011
Unless you have walked in my shoes...
Unless You Have Walked In My Shoes
Please don't tell me to be strong
To be wise and stand up tall
Please don't urge me to move on
Don't treat me as if I am a pawn.
I'm not heartless, callous and cold;
I'm not brave nor very bold
I'm not as tough as I need to be
So understand, that's just not me!
It's not advice I seek from you
Just stand by me; let me work it through
And though I fight daily to stay alive
With family and friends I will survive.
Don't be so eager to be my judge
Unless you have walked in my shoes!
And though I don't hold a grudge
I'm still battered and bruised.
Please don't tell me to be strong
To be wise and stand up tall
Please don't urge me to move on
Don't treat me as if I am a pawn.
I'm not heartless, callous and cold;
I'm not brave nor very bold
I'm not as tough as I need to be
So understand, that's just not me!
It's not advice I seek from you
Just stand by me; let me work it through
And though I fight daily to stay alive
With family and friends I will survive.
Don't be so eager to be my judge
Unless you have walked in my shoes!
And though I don't hold a grudge
I'm still battered and bruised.
Thursday, 17 November 2011
Mourners Bill Of Rights!
The Mourners Bill Of Rights
1. You have the right to experience your own unique grief.
2. You have the right to talk about your grief.
3. You have the right to feel a multitude of emotions.
4. You have the right to be tolerant of your physical and emotional limits.
5. You have the right to experience " griefbursts"
6. You have the right to make use of ritual.
7. You have the right to make use of Spirituality.
8. You have the right to search for meaning.
9. You have the right to treasure your memories.
10. You have the right to move toward your grief and heal.
1. You have the right to experience your own unique grief.
2. You have the right to talk about your grief.
3. You have the right to feel a multitude of emotions.
4. You have the right to be tolerant of your physical and emotional limits.
5. You have the right to experience " griefbursts"
6. You have the right to make use of ritual.
7. You have the right to make use of Spirituality.
8. You have the right to search for meaning.
9. You have the right to treasure your memories.
10. You have the right to move toward your grief and heal.
Friday, 14 October 2011
Infant loss is more than an empty cradle. It's a life sentence.
Did you know that October is Pregnancy and Infant Loss Awareness Month? I'll bet not. Despite the infant mortality crisis that's been at the forefront of Milwaukee's public health news for months, the only people who have more than a cursory comprehension of what it means to lose a baby are those who've lived it.
Infant loss is nature's cruelest practical joke. It's investing all of the required time and effort into pregnancy, only to be robbed of the result. It's cradling a body that grew within your own and trying to reconcile the cold, lifeless form in your arms with your memory of the baby who turned double flips in your womb.
It's worrying that you'll forget what your child looked like and snapping an album's worth of photos that no one will ever ask to see. It's sobbing so hard you can't breathe and wondering if it's possible to cry yourself to death.
Infant loss is handing off a Moses basket to the nurse who's drawn the unfortunate duty of delivering your pride and joy to the morgue and walking out of a hospital with empty arms.
It's boxing up brand new baby clothes and buying a 24-inch casket. It's sifting through sympathy cards, willing your foolish body to stop lactating, clutching your baby's blanket to your chest in hopes of soothing the piercing ache in your heart.
It's resisting the urge to smack the clueless individuals who compare your situation to the death of their dog or who tell you you'll have another baby, as if children are somehow replaceable.
Infant loss is explaining to your 7-year-old that sometimes babies die and being stumped into silence when she asks you why. It's watching other families live out your happy ending and fighting a fresh round of grief with every milestone you miss.
It's being shut out of play groups for perpetuity. It's skipping social events with expectant and newly minted mothers because, as a walking worst-case scenario, you don't want to put a damper on the party.
It's listening to other women gripe about motherhood and realizing that you no longer relate to their petty parental complaints because, frankly, when you've buried a baby, a sleepless night with a vomiting toddler sounds something like a gift.
Infant loss is pruning from your life the friends and relatives who ignore or minimize your loss. It's recognizing that, while they may not mean to be hurtful, the fact that they don't know any better doesn't make their utter lack of empathy one whit easier to bear.
My baby girl would have been 5 years old this month. I don't know what she'd look like, what her favorite food would be.
I've never had the privilege of tucking her into bed, taking her to the zoo or kissing her boo-boos. I will never watch her graduate or walk down the aisle.
Infant loss is more than an empty cradle. It's a life sentence.
Laura Schubert of New Berlin is a mother, teacher and two-time breast cancer survivor.
Original Article
Infant loss is nature's cruelest practical joke. It's investing all of the required time and effort into pregnancy, only to be robbed of the result. It's cradling a body that grew within your own and trying to reconcile the cold, lifeless form in your arms with your memory of the baby who turned double flips in your womb.
It's worrying that you'll forget what your child looked like and snapping an album's worth of photos that no one will ever ask to see. It's sobbing so hard you can't breathe and wondering if it's possible to cry yourself to death.
Infant loss is handing off a Moses basket to the nurse who's drawn the unfortunate duty of delivering your pride and joy to the morgue and walking out of a hospital with empty arms.
It's boxing up brand new baby clothes and buying a 24-inch casket. It's sifting through sympathy cards, willing your foolish body to stop lactating, clutching your baby's blanket to your chest in hopes of soothing the piercing ache in your heart.
It's resisting the urge to smack the clueless individuals who compare your situation to the death of their dog or who tell you you'll have another baby, as if children are somehow replaceable.
Infant loss is explaining to your 7-year-old that sometimes babies die and being stumped into silence when she asks you why. It's watching other families live out your happy ending and fighting a fresh round of grief with every milestone you miss.
It's being shut out of play groups for perpetuity. It's skipping social events with expectant and newly minted mothers because, as a walking worst-case scenario, you don't want to put a damper on the party.
It's listening to other women gripe about motherhood and realizing that you no longer relate to their petty parental complaints because, frankly, when you've buried a baby, a sleepless night with a vomiting toddler sounds something like a gift.
Infant loss is pruning from your life the friends and relatives who ignore or minimize your loss. It's recognizing that, while they may not mean to be hurtful, the fact that they don't know any better doesn't make their utter lack of empathy one whit easier to bear.
My baby girl would have been 5 years old this month. I don't know what she'd look like, what her favorite food would be.
I've never had the privilege of tucking her into bed, taking her to the zoo or kissing her boo-boos. I will never watch her graduate or walk down the aisle.
Infant loss is more than an empty cradle. It's a life sentence.
Laura Schubert of New Berlin is a mother, teacher and two-time breast cancer survivor.
Original Article
Monday, 10 October 2011
1 Month and 2 Weeks
Dear Hannah,
Its been 1 month and 2 weeks since you've been gone. It seems like just yesturday. I can still remember every emotion, every feeling all of it. I remember your smell, how soft your skin was, the texture of your hair. I miss you so much. I am sorry I haven't been out to see your grave. I can't do it right now. I want to but I love you so much. I know daddy misses you a lot to. He doesn't show in tears, but you can tell it tears him apart. Kids still ask about you, where you are. By the way, the kids are jealous you can count to 24 before they cam. They think that it's really cool! We keep seeing ladybugs everywhere. I went to church yesturday for the first time since your funeral. It was very hard, but I say a ladybug on the ceiling, so that helped a little bit. I wish you were hear. I can't go near baby girls right now. I'm sad because I don't have my baby girl. In 5 days it's Pregnancy and Infant Loss Awareness Day. Mummy and Daddy are planning to light candles to remember you.
Love and Miss you,
Mummy xoxo
Its been 1 month and 2 weeks since you've been gone. It seems like just yesturday. I can still remember every emotion, every feeling all of it. I remember your smell, how soft your skin was, the texture of your hair. I miss you so much. I am sorry I haven't been out to see your grave. I can't do it right now. I want to but I love you so much. I know daddy misses you a lot to. He doesn't show in tears, but you can tell it tears him apart. Kids still ask about you, where you are. By the way, the kids are jealous you can count to 24 before they cam. They think that it's really cool! We keep seeing ladybugs everywhere. I went to church yesturday for the first time since your funeral. It was very hard, but I say a ladybug on the ceiling, so that helped a little bit. I wish you were hear. I can't go near baby girls right now. I'm sad because I don't have my baby girl. In 5 days it's Pregnancy and Infant Loss Awareness Day. Mummy and Daddy are planning to light candles to remember you.
Love and Miss you,
Mummy xoxo
Sunday, 18 September 2011
3 weeks after Hannah- dealing with frustrations
People forget everyone grieves differently, but society has destroyed the word "normal". I have been called a bad mother with poor judgement, or that i should be beat to an inch of my life for me grieving my daughter by posting her pictures on facebook. Dealing with that and more from August 28th has made my grieving harder. Alot of people think "that will never happen to me" when realistically everything could happen to anyone.
I might be strong on the outside, but realistically I'm barely here. My life feels like a blur, like I'm standing on th street and cars are speeding past me. Reality of Hannah's death is slowly hitting, but in many ways it feels like a dream. I only leave my apartment if I'm with someone else, or I'm going to meet someone downstairs. I don't leave the 3rd floor.
I'm so happy for my friends who are/have expected the arrival of their daughters, it's difficult for me to look at pictures and not see Hannah's face, or for me to share in the excitement. Deep down I honestly am excited for you all.
All Hannah knew was love, I'm glad she didnt have to deal with the hate and the rude people. I don't want people feeling sorry for me. I want people to keep reminding society that "normal" doesnt exist.
I might be strong on the outside, but realistically I'm barely here. My life feels like a blur, like I'm standing on th street and cars are speeding past me. Reality of Hannah's death is slowly hitting, but in many ways it feels like a dream. I only leave my apartment if I'm with someone else, or I'm going to meet someone downstairs. I don't leave the 3rd floor.
I'm so happy for my friends who are/have expected the arrival of their daughters, it's difficult for me to look at pictures and not see Hannah's face, or for me to share in the excitement. Deep down I honestly am excited for you all.
All Hannah knew was love, I'm glad she didnt have to deal with the hate and the rude people. I don't want people feeling sorry for me. I want people to keep reminding society that "normal" doesnt exist.
Sunday, 11 September 2011
Letters to Hannah #12
Dear Hannah,
Today is August 27th. I delivered you this morning at 11:38. You weighed 2 lbs 12 oz and you were 17 inches long. You were born with 12 fingers and 12 toes. You had a full head of blonde hair, same hair colour as your aunt Aimee. Daddy and I are sad that we never got to see your beautiful eyes open or hear your cry's. We hold on to the fact that we will all be reunited one day. You are absolutely adorable and a perfect angel.
We love you Hannah.
love Mummy and Daddy!!
Today is August 27th. I delivered you this morning at 11:38. You weighed 2 lbs 12 oz and you were 17 inches long. You were born with 12 fingers and 12 toes. You had a full head of blonde hair, same hair colour as your aunt Aimee. Daddy and I are sad that we never got to see your beautiful eyes open or hear your cry's. We hold on to the fact that we will all be reunited one day. You are absolutely adorable and a perfect angel.
We love you Hannah.
Letters to Hannah #11
Dear Hannah,
Daddy, grandma and I all just got home from the hospital. You grew your wings early this morning. Mummy's gut feeling was right, you did pass away. you are, were and always will be mummy and daddy's little fighter. You beat odds we weren't sure you ever would. You are our little ladybug. Rest in peace Hannah. You are with god now, and you are our guardian angel.
We love you Hannah.
xoxo
Mummy and Daddy
Daddy, grandma and I all just got home from the hospital. You grew your wings early this morning. Mummy's gut feeling was right, you did pass away. you are, were and always will be mummy and daddy's little fighter. You beat odds we weren't sure you ever would. You are our little ladybug. Rest in peace Hannah. You are with god now, and you are our guardian angel.
We love you Hannah.
xoxo
Mummy and Daddy
Letters to Hannah #10
Dear Hannah,
My gut tells me something is wrong. When I woke up this morning something was different. You didn't do your usual morning kicks and it was easier for me to get out of bed. You didn't move much during VBC either. Mummy is going to the hospital soon to see if you are okay. You are 31 weeks gestation today Hannah. We've come so far.
I love you Hannah!
Love mummy!!
My gut tells me something is wrong. When I woke up this morning something was different. You didn't do your usual morning kicks and it was easier for me to get out of bed. You didn't move much during VBC either. Mummy is going to the hospital soon to see if you are okay. You are 31 weeks gestation today Hannah. We've come so far.
I love you Hannah!
Love mummy!!
Letters to Hannah #9
Dear Hannah,
We had a really bad storm tonight. I was really scared, and you really weren't moving a lot. I hope you are okay. I love you so much please move around some more!
Love mummy!! xo
We had a really bad storm tonight. I was really scared, and you really weren't moving a lot. I hope you are okay. I love you so much please move around some more!
Love mummy!! xo
Letters to Hannah #8
Dear Hannah,
Today is your first day at Vacation Bible Camp. We had a busy day, and you slept through most of it. You got to hear kids, and songs and a story. I hope you had fun, we have 4 more days of it.
I love you Hannah!
Love Mummy!
Today is your first day at Vacation Bible Camp. We had a busy day, and you slept through most of it. You got to hear kids, and songs and a story. I hope you had fun, we have 4 more days of it.
I love you Hannah!
Love Mummy!
Letters to Hannah #7
Dear Hannah,
You are now 30 weeks gestation. You have beat the odds baby girl! Yesterday mummy and grandma got to look at you again. Mummy's regular doctor wasn't there so the fill in doctor gave mummy a long look at you. We got a lot of pictures of you to. You were very active. I saw your face and Hannah you are perfect in mummy's eyes. Mummy cried watching you on the ultrasound machine. They were happy tears though. I'm so proud to call you my beautiful daughter. I love you!
xoxo
Love mummy!!!
You are now 30 weeks gestation. You have beat the odds baby girl! Yesterday mummy and grandma got to look at you again. Mummy's regular doctor wasn't there so the fill in doctor gave mummy a long look at you. We got a lot of pictures of you to. You were very active. I saw your face and Hannah you are perfect in mummy's eyes. Mummy cried watching you on the ultrasound machine. They were happy tears though. I'm so proud to call you my beautiful daughter. I love you!
xoxo
Saturday, 3 September 2011
Letters to Hannah #6
Dear Hannah,
Did you feel daddy painting mummy's tummy today? He painted a big ladybug and 4 little ladybugs. Hannah I want you to know how much you mean to both daddy and I. You are our world. We are both so happy, proud and excited that we get to call you our daughter. You are our little ladybug. He knows what is going on with you and he tells anyone who will listen about how precious you are to him, and everyone who talks to him learns all about Holoprosencephaly. You Hannah, have changed your daddy in ways I can't explain, but don't worry it's all for the better. Hannah you have brought mummy and daddy close. I thank you for that. You have made mummy and daddy become best friends! I thank God everyday for giving us the gift of you.
Love Mummy!
Did you feel daddy painting mummy's tummy today? He painted a big ladybug and 4 little ladybugs. Hannah I want you to know how much you mean to both daddy and I. You are our world. We are both so happy, proud and excited that we get to call you our daughter. You are our little ladybug. He knows what is going on with you and he tells anyone who will listen about how precious you are to him, and everyone who talks to him learns all about Holoprosencephaly. You Hannah, have changed your daddy in ways I can't explain, but don't worry it's all for the better. Hannah you have brought mummy and daddy close. I thank you for that. You have made mummy and daddy become best friends! I thank God everyday for giving us the gift of you.
Love Mummy!
Friday, 2 September 2011
Letters to Hannah #5
Dear Hannah,
Daddy, Grandma and I all got to see you again today. You looked beautiful. I love having ultrasounds so I can see you! You are measuring about a week behind but that is expected. You are still our little ladybug. You are so loved!
We love you. xoxo
Mummy!!
Daddy, Grandma and I all got to see you again today. You looked beautiful. I love having ultrasounds so I can see you! You are measuring about a week behind but that is expected. You are still our little ladybug. You are so loved!
We love you. xoxo
Mummy!!
Thursday, 1 September 2011
Letters to Hannah #4
Dear Hannah,
I love how active you are. You're an acrobat. Between you sticking your head and bum out the top and sides of my belly, but also your ultrasound picture today you look like your sucking on your heels. Your a silly little ladybug. By the way you have your daddy's fighting abilities. Hello ribs feeling bruised! I love you Hannah. You will forever be mine and daddy's baby girl. We love you so much!
Love Mummy and Daddy!
I love how active you are. You're an acrobat. Between you sticking your head and bum out the top and sides of my belly, but also your ultrasound picture today you look like your sucking on your heels. Your a silly little ladybug. By the way you have your daddy's fighting abilities. Hello ribs feeling bruised! I love you Hannah. You will forever be mine and daddy's baby girl. We love you so much!
Sunday, 28 August 2011
Letters to Hannah #3
Dear Hannah,
We went swimming today. Your a little fish. It was such an amazing feeling to feel you 100% because the water made my tummy weightless. I love you so much. I'm glad we got to go!
Love Mummy
We went swimming today. Your a little fish. It was such an amazing feeling to feel you 100% because the water made my tummy weightless. I love you so much. I'm glad we got to go!
Love Mummy
Letters to Hannah #2
Dear Hannah,
You are very active baby girl. I already know what music you like best and what you don't. You seem to really like Glee also. Your favourite song they cover is Keep Holding On. You seem to dance when this song is on. You like playing games with daddy to. You and daddy play hide and seek, you get excited when he blows on my stomach. You love daddy's kisses and rubs. You also love Brinn Brinn. She protects you and sleeps beside you on the bed. We love you Hannah!
Love Mummy, Daddy, Bella and Brinnley!
You are very active baby girl. I already know what music you like best and what you don't. You seem to really like Glee also. Your favourite song they cover is Keep Holding On. You seem to dance when this song is on. You like playing games with daddy to. You and daddy play hide and seek, you get excited when he blows on my stomach. You love daddy's kisses and rubs. You also love Brinn Brinn. She protects you and sleeps beside you on the bed. We love you Hannah!
Love Mummy, Daddy, Bella and Brinnley!
Letters to Hannah
Dear Hannah,
Today I am 19 weeks and 5 days gestation. I found out that you are a little girl. Daddy and I found out about a week ago that there was something wrong with you. A big word called Holoprosencephaly. Its a big long word but it means you aren't developing normally. Mummy's family doctor has helped hundreds of women while they are pregnant, but has never seen this. Hannah you are 1 out of every thousands of babies to have this condition. Between mummy's doctor and the research I have done you have a 3% chance of living. I am seeing a OBGYN and a team of people to help me and daddy understand how we can help you best. God made you the way you are for a reason, and little Hannah we just don't understand why. We love you Hannah, we have since we found out we were pregnant. You are God's precious gift to us and you are loved!
Love Mummy!
Today I am 19 weeks and 5 days gestation. I found out that you are a little girl. Daddy and I found out about a week ago that there was something wrong with you. A big word called Holoprosencephaly. Its a big long word but it means you aren't developing normally. Mummy's family doctor has helped hundreds of women while they are pregnant, but has never seen this. Hannah you are 1 out of every thousands of babies to have this condition. Between mummy's doctor and the research I have done you have a 3% chance of living. I am seeing a OBGYN and a team of people to help me and daddy understand how we can help you best. God made you the way you are for a reason, and little Hannah we just don't understand why. We love you Hannah, we have since we found out we were pregnant. You are God's precious gift to us and you are loved!
Love Mummy!
Thursday, 18 August 2011
Cleft Lip
Tuesday, 19 July 2011
A poem a friend posted on my facebook page.
Take strength from those around you,
When you have none left yourself,
We will help carry your burden,
We are here to offer help,
And although we can not ever know,
What you are going thru,
We are here to offer comfort,
When you cry we cry too!
*She posted it at a great time! Sure I teared up reading it but it's perfect for the current situation
When you have none left yourself,
We will help carry your burden,
We are here to offer help,
And although we can not ever know,
What you are going thru,
We are here to offer comfort,
When you cry we cry too!
*She posted it at a great time! Sure I teared up reading it but it's perfect for the current situation
Fake Smiles seem to be the norm for me
I have read so much about Holoprosencephaly, Trisomy 13 and other genetic conditions but I don't understand how all the parents seem so strong. I constantly have people saying "you seem so strong", "I don't know how you do it". Truth is I'm not that strong and really its Hannah who is keeping me going. Its true you don't know the bond between a mother and child until you feel the movement inside. Hannah constantly tells me shes still here, shes still fighting. If I could stay pregnant forever just to keep her alive I would. There's no way to prepare yourself to bury your child, let alone a baby. I am already grieving. In some ways I think its grieving the loss of my other children, as well as the loss of my "perfect pregnancy". Holoprosencephaly is such a rare thing I am the only one in my group of friends who is experiencing. I have lost a lot of friends only because I believe they just don't know what to say. Its difficult to celebrate with friends who are expecting unless they are late in their pregnancy. Its also difficult for me to talk and be around friends with babies, or even hear about how their children are progressing. My best friend is understanding enough to allow me to be a part of her children's life knowing that in many ways I look at them as if they were my own. My life feels like its appointments after appointments. It shut down after them it seems. It is difficult for me to talk to people as all I do is cry. I get about half way home from appointments and usually cry, or its just waterworks when I get home. I know people notice I'm not happy bubbly Clare, but really I cant keep hiding my emotions.
Holoprosencephaly....WHAT?
No expecting parent ever expects to hear that the child they are carrying has something wrong. We always think it happens to other families, other moms. We all want to believe our children will be prefect.
Up until my 18th week I believed I was having a normal pregnancy, the baby was growing, my belly was growing it was normal. I went into my 18 week ultrasound believing everything was normal, things quickly changed when the ultrasound technician said she needed to go double check some things with the radiologist. I caught a quick glimpse of the screen when she was gone thinking maybe it was routine. She came back and took a few more pictures, printed mined then sent me on my way.
The next day I received a phone call from my Dr. He wanted to see me ASAP. Instantly I knew something was wrong. Motherly instinct kicked in. Friends kept telling me to think positive, or that maybe he just wanted to tell me the gender. I went to the appointment the next day and could tell by my Dr's body language it wasn't good news.
He proceeded to tell me that the baby had a condition he had never heard of. I was the first woman he has ever had as a patient to have a child with this condition. He told me that the baby had Alobar Holoprosencephaly, Hypotelorism, and a Cleft lip and palate. My Dr explained to me that Alobar Holoprosencephaly is where the brain didn't merge when it was supposed to, so instead of right and left brain baby only has one part. Hypotelorism meant baby's eyes are to close together. Due to the brain not developing properly the baby's mid line on her face isn't straight which caused the cleft lip and palate, as well as her eyes being to close together. Needless to say my motherly instinct was right. I left the appointment told specific family and friends, who I knew would support me, then faced the hardest part, telling the father. We were in the middle of moving at the time so we had company and help, and decided to hide exactly what it was for the time being. We only stated that the baby had some complications.
My Dr arranged for me to see a specialist and by the end of the week the appointment was made and the dreading started. All my life I have wanted to be a mom. I've had miscarriages but never had I gone this far into a pregnancy. This baby is still here for a reason was the only thing that kept me going as I did research upon research. The specialist appointment came, I had an ultrasound and it was LONG.
Over an hour later, a Dr came into the room to double check all the pictures and to tell me further explain the condition and to give more detail. I remember most of what he had told me, I had already figured out in my own research, but it was relieving to hear from a Dr. He asked if I had any questions and the only one I had at that point was "What's the gender?" the Dr replied I was carrying a little girl. As weird as it was knowing I was going to have a daughter made things seem better at least for a little.
After the ultrasound I met with my team. It was my specialist OBGYN, a Dr, a Pediatric Dr, Genetics counsellor, and a Resident Dr. Each explained the part they play in my team. My Specialist explained further detail of my daughters condition. Needless to say it was a rough day, and I had had to remember everything and go tell the father.
I had a small procedure done called an Amniocentesis, basically they take some of the amniotic fluid and test it to see what caused the condition. After that day it was constant good day, bad day etc. God does things in mysterious ways. I still don't understand why MY daughter has such a lethal condition, its a constant question "Why me?".
Up until my 18th week I believed I was having a normal pregnancy, the baby was growing, my belly was growing it was normal. I went into my 18 week ultrasound believing everything was normal, things quickly changed when the ultrasound technician said she needed to go double check some things with the radiologist. I caught a quick glimpse of the screen when she was gone thinking maybe it was routine. She came back and took a few more pictures, printed mined then sent me on my way.
The next day I received a phone call from my Dr. He wanted to see me ASAP. Instantly I knew something was wrong. Motherly instinct kicked in. Friends kept telling me to think positive, or that maybe he just wanted to tell me the gender. I went to the appointment the next day and could tell by my Dr's body language it wasn't good news.
He proceeded to tell me that the baby had a condition he had never heard of. I was the first woman he has ever had as a patient to have a child with this condition. He told me that the baby had Alobar Holoprosencephaly, Hypotelorism, and a Cleft lip and palate. My Dr explained to me that Alobar Holoprosencephaly is where the brain didn't merge when it was supposed to, so instead of right and left brain baby only has one part. Hypotelorism meant baby's eyes are to close together. Due to the brain not developing properly the baby's mid line on her face isn't straight which caused the cleft lip and palate, as well as her eyes being to close together. Needless to say my motherly instinct was right. I left the appointment told specific family and friends, who I knew would support me, then faced the hardest part, telling the father. We were in the middle of moving at the time so we had company and help, and decided to hide exactly what it was for the time being. We only stated that the baby had some complications.
My Dr arranged for me to see a specialist and by the end of the week the appointment was made and the dreading started. All my life I have wanted to be a mom. I've had miscarriages but never had I gone this far into a pregnancy. This baby is still here for a reason was the only thing that kept me going as I did research upon research. The specialist appointment came, I had an ultrasound and it was LONG.
Over an hour later, a Dr came into the room to double check all the pictures and to tell me further explain the condition and to give more detail. I remember most of what he had told me, I had already figured out in my own research, but it was relieving to hear from a Dr. He asked if I had any questions and the only one I had at that point was "What's the gender?" the Dr replied I was carrying a little girl. As weird as it was knowing I was going to have a daughter made things seem better at least for a little.
After the ultrasound I met with my team. It was my specialist OBGYN, a Dr, a Pediatric Dr, Genetics counsellor, and a Resident Dr. Each explained the part they play in my team. My Specialist explained further detail of my daughters condition. Needless to say it was a rough day, and I had had to remember everything and go tell the father.
I had a small procedure done called an Amniocentesis, basically they take some of the amniotic fluid and test it to see what caused the condition. After that day it was constant good day, bad day etc. God does things in mysterious ways. I still don't understand why MY daughter has such a lethal condition, its a constant question "Why me?".
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