Frequently Asked Questions

1. What is Chiari III Malformation?

This is hard to explain.  NIH has a fact sheet to give information https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet.  Here some basics copied from the site.  Keep in mind we do not know for sure yet that this is what the baby has.  The most concerning finding in the baby is the large amount of fluid on the brain and minimal brain development.  This diagnosis could be the cause of the hydrocephalus. 

“Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM). Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord. The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain. Type III is very rare and the most serious form of Chiari malformation. In Type III, some of the cerebellum and the brain stem stick out, or herniate, through an abnormal opening in the back of the skull. This can also include the membranes surrounding the brain or spinal cord. The symptoms of Type III appear in infancy and can cause debilitating and life-threatening complications. Babies with Type III can have many of the same symptoms as those with Type II but can also have additional severe neurological defects such as mental and physical delays, and seizures.”

2. What can I do to help?

Pray.  

Prayers are what we need most.  We both have complete faith that God could heal our child.  We don’t know if that is his plan, but an army praying for us can only help.  Prayers for miraculous healing. Prayers for peace and health for me in this time so I can best care for baby.  Prayers for Joe to stay strong but still ask for help when he needs it.  Prayers for finances to work out between missed work and medical appointments. Prayers for our family to find faith and peace as well.

Listen and check in.

Texts and messages and cards checking in are comforting.  Calls can be overwhelming, especially when information is new.  Neither Joe nor I love talking on the phone.  When talking to us, just listening can be the most helpful.  Telling us what we should be doing differently or telling stories about similar things that have happened to you or someone you know can be overwhelming.  Asking how we are doing when we see you in person is appreciated, even if we don’t have a good answer.  We are not pretending this isn’t happening, and we don’t expect you to either.  

Avoid unhelpful sayings.

People don’t know what to say to us.  That is totally okay. There is nothing perfect to say.  I don’t know what to say.  Joe's doesn't know what to say. The professionals don’t know what to say.  Saying you don’t know what to say is okay, even appreciated and validating.  When people don’t know what to say, they tend to try to come up with something by relying on common sayings.  Sometimes these can (very unintentionally) be frustrating or hurtful to hear.  An example is “God doesn’t give you more than you can handle.”  This is simply not true.  We cannot handle this.  God never makes this promise in the bible. God is helping us handle this, He does promise that.  We know people say this because they don’t know what else to say.  But, honestly, it is not helpful.  Here is a great article a friend (thanks Christina!) shared with me about this saying 

https://flawedyetcalled.wordpress.com/2016/06/01/the-day-god-gave-me-more-than-i-could-handle/.  Another example is “Maybe God just wants this baby now.”  God will have this baby whether he/she lives or not.  His/her life will be dedicated to Him.  While it may be in God’s plan to have this baby in heaven now, we just don’t need to hear this.  Lastly, it is not helpful to tell us you completely understand what we are going through because you have had miscarriages, faced infertility, had a sick child, etc.  You cannot possibly understand what we are facing.  We cannot possibly understand what you have gone through. Every situation is completely different. If you have said anything like this to us, do not feel bad.  We know everyone says what they think will help.  Or just the only thing they can think of in the moment.  We are not angry.  We just want to tell you what we need to hear, or not hear.  Again, if you have said these things, it is okay.  We know everyone means well! 

3. What are the options for treatment?

We don’t really know yet.  We are in the middle of a lot of waiting.  Basically when you find out your unborn child has a birth defect of any kind there are four general options.  The first is terminating the pregnancy.  This is not an option for us.  We will give this baby a chance to live.  We will spend as much time with him/her as possible, even if the only time we get is while I am pregnant. We will talk to him/her.  We will love him/her.  We will make sure he/she knows how much love there is in the world.  Even if we get a few minutes or hours after birth.  We will leave the baby’s life in God hands.  We will not chose for Him.  The next option (in some cases) is surgery before birth.  This does not seem to be an option for us due to the extensive issues.  However, we will know for sure after going to CHOP.  Next, there is surgery after birth.  For our baby this could look like repair of the spinal deformity and a shunt to drain the fluid build up in the brain.  We don’t know if this would be an option for sure yet. Again, after CHOP we should know.  Lastly, we can elect to chose palliative care after birth. Palliative care provides comfort for the baby and family, but does not treat the fatal conditions.  It is much like hospice care.  This option is what we would consider if the prognosis meant that the baby would not have any quality of life and live in a comatose or painful state no matter what treatment was given.  

4. Are you higher risk for miscarriage?

Only slightly.  All pregnancies carry a 1% chance of miscarriage after 12 weeks.  I have a roughly 2% chance of miscarriage, according to doctors.  The baby is growing at a perfect rate and the heartbeat is strong.  There are no concerns for miscarriage at this time.  But it does happen.

5. Are the concerns for the baby related to the initial blighted ovum diagnosis?

No.  A blighted ovum is a baby that is lost within the first few hours-days of conception.  That diagnosis was incorrect and unrelated.

6.  Is it a boy or girl?  Are you finding out?

We don’t know yet.  I have had 8 ultrasounds, but it is too soon to tell! When the amniocentesis results are in the DNA will tell us, and yes we will find out and will share the results!

7. Do you have a name picked out?

We do think we have settled on a name for each sex.   We are not sharing them quite yet! :)

8. Is the baby in pain?

We have been assured that since the baby's nervous system is still developing and is developing around all the malformations, that he/she feels no pain and will not feel pain during the pregnancy. 

9. Are you (Ali) at risk because you are continuing with the pregnancy?

No.  There is no risk to me at all.

10. Will this happen with future pregnancies?

CHOP probably can tell us more.  But my research makes it seem unlikely.  However, right now I have not been focused on that.  Right now all I care about is my baby.  Right now, ever being pregnant again seems like an overwhelming concept.  We will worry about that later, when/if we chose to. 

11.  How are you doing?

I used to say we have good days and bad days.  But the truth is we have bad days and terrible days.  We both have things that help us through.  We both have very supportive family, friends and coworkers.  I cannot thank my coworkers enough for covering for me on days I've had to miss, or my supervisor enough for all the support she has given.  I can't imagine going through this while worrying about keeping my job and health coverage.  Though Joe's company is small and missing work does mean lost pay, his supervisor and coworkers have also been extremely supportive and we are so thankful.  Last weekend we escaped to Dimock for a while and were surrounded by the love of my family.  This past week with me in the hospital and home sick, Joe's family has helped take care of me and made sure I had everything I needed.  For me, I like to research and get all the data and information I can so I know what to ask the doctors.  I make lists, and charts, and graphs and give myself the illusion I have a tiny bit of control.  Joe takes care of me to feel a little more in control.  He makes me stay home from work when I can't even speak coherently (good call Joe).  He takes my computer away so I can't answer emails (does he know they are on my phone too ;)) He cooks for me and cleans the house when I can't get out of bed.  We are getting by.  Thanks for asking. We are counting down the days until CHOP.  

Thanks for all the support, please ask any other questions you have.  We are overwhelmed by seeing how many people read the post I put up yesterday and encouraged by all the prayers and support. Thank you.