I was discussing my blog, and wanting to be available to help other people that have similar problems that I did with Caroline, with my counselor the other day.  I want to be supportive and available to people, but I’m not able to be emotionally supportive to a lot of people…it is so draining for me and I am still trying to work through my own stuff. So I decided to write up some things that made a GIANT difference in our lives.

The first thing that I bought that made a difference for me was a snug-n-go.  I got it on amazon to help support Caroline’s head and shoulders in her carseat.  It helped me keep her head up in the ‘sniffing’ position, to keep her airway more open. In the pictures, it is the black thing that is framing her face.

Caroline did well with most everything else.  We tried feeding her in a high chair, but that was difficult, so I fed her sitting in my glider with her head propped on the arm rest.

After the first time she got sick, she ALWAYS got wheezy 😦 She got a nebulizer with a cute dragon mask which we used a lot 🙂

Once she started getting a little bigger some things started becoming more problematic. Like bathing.  She outgrew her whale tub, but couldn’t sit up on her own. I found this thing that looks like a boppy for the tub…I used to prop her head on it to keep it out of the water. I don’t have a picture of it in use, so I used my feet for a size reference.

When she outgrew her infant seat, we started having real problems.  I got her a britax car seat and had it rearfacing, which was fine for the car…but where was I supposed to put her otherwise? We had always used her carseat with the snug-n-go as her seat…we brought it into stores, restaurants…I used it in my strollers so I could see her, etc.  So what i did was I bought a snug-n-go too (a bigger one) and I bought a city jogger city select stroller.  I chose that stroller because I could move the seat to face me and I could lay it flat, have it reclined, or have it completely upright.  I also chose it because it could be a double stroller (I was pregnant).  The double capability was helpful when travelling.  I was able to double the stroller, have Caroline in her seat, and have the other half to carry her carseat and other things she needed. The first picture was halloween (dressed like an owl), the second is at the doctor’s office (with my friend’s baby…they were there for moral support XO), the third is a close up of her in her stroller with her snug-n-go too.

That brings me to my Ergo.  I love my ergo.  I used it all the time…especially in airports etc.  I was able to wear her and use the bathroom or whatever…and not have to put her down…she definitely couldn’t sit or stand by herself. I wore her until I was about 34 wks, then we both got too uncomfortable.  I wasn’t able to easily find a picture of Caroline in the Ergo.

Another useful thing I had was a kid co pop up UV tent.  It was nice to have a very portable and small tent that I could put her in anywhere.  I used it at people’s homes…it was a clean place to put her away from other kids and pets. I used it outside at the barn (pictured below), and I also used it as a traveling bed.

One thing Caroline seemed to really enjoy was her swing.  She liked the motion and it seemed to be comforting to her. When she wasn’t in one of her parents arms, she was in her swing. As she got bigger, and I got more pregnant, it was difficult to get her into her infant swing that had the arm at the top and the mobile…I bumped her head a couple of times! I felt terrible!!! So I went out and bought her a glider swing that didn’t have the big arm in the way.  That was easier for me.  I tried to find a motorized swing for special needs, thinking I should get a bigger one that would last her, but I couldn’t find one that I thought would work for her…for less than $700!!! They were all too big.  Caroline was getting bigger but she was still very small, less than 30 pounds. Here is a pic of the glider swing I found at buy buy baby on clearance 🙂

We also had some other medical devices and medications that made my life so much easier.  These are things that should be discussed your personal physician.  I will tell you a small amount about them for completeness and so you know what has worked for Caroline.

Caroline’s swallowing started getting worse and she started aspirating when she was sick (with upper respiratory stuff). After she recovered from being sick, her swallowing improved…for a while.  We initially started using ‘thick it’ at the recommendation of a speech therapist only when she was sick.  We had to start using it all the time when she was about 15 months old.  It helped immensely.  We spoon fed her milk and pedialyte instead of her choking while trying to drink out of a bottle. After I delivered Caroline’s little brother, I took a supplement to increase my milk supply (mother’s milk plus) so that she would be able to have breastmilk again.  But she wasn’t able to drink it without choking and the thick it didn’t work well.  I used rice cereal to thicken the milk and bottle fed her with nuk bottles and fast flow nipples.

Caroline started having a problem even managing her secretions, especially when she was sick.  My hospice nurse recommended atropine drops orally.  LIFE CHANGER. That was huge! Feeding Caroline had become quite a struggle, and this really helped.

Caroline’s sleep cycle got out of whack.  I called her my second shift baby.  She would sleep until 10 or 11 am, and sometimes wouldn’t go to bed until 10 or 11 pm.  At the recommendation of the hospice team, we added melatonin to her night time medication bottle.  That really helped with her sleep patterns.

I hope this information is helpful!

I’m sorry it’s been a while since my last entry.

It has been a busy few months…the holidays and birthdays…but mostly April.

April was a difficult month for us. That is the month Caroline was born and the month that she died. She was born on the 18th and she died on the 4th (4-4-14)…two weeks shy of her second birthday.  We weren’t sure how we would manage to get through April. I still can’t believe it’s been a whole year since she died.  I miss her every day.

By the grace of the world we managed to survive through this year…and are actually do well.  Shocking I know.

I think one of the main reasons we have done well was because of the agreement we made when we found out Caroline had a genetic condition. My husband and I agreed to always be honest with each other and open with each other about how we are feeling and concerns we are having. Based on our strong foundation of a relationship with this agreement, we have managed to survive and flourish in our new environment.

The other main reason we didn’t completely give up and crawl under a rock (or beer bottle) was because of our son.  We chose to get pregnant pretty quickly after we had Caroline…I think we were both concerned that if we didn’t have another child right away, we wouldn’t want to after Caroline passed…we didn’t want to feel like we were replacing her.  I was pregnant with Jimmy before her first birthday.  He was born in December in the cold tundra.  We had 4 wonderful months together with both of our children.

It feels like it is time to put this in writing…….Caroline had been getting progressively worse…getting sick more frequently and requiring more meds, steroids, etc to improve her quality of life.  The last time she got sick, she got sick fast.  She was ok one day and then on April 3rd I woke up at 4 am hearing her struggling to breathe.  Steve woke up at 5 am with me in tears trying to draw up the morphine but not being able to see through the tears in my eyes.  He helped me…we got her medication (morphine, steroids, antibiotics) and gave her a bunch of breathing treatments, atropine drops, and suctioning and she improved some.  He called out of work.  I texted my hospice RN (we made an apt for the following day at 1 pm). Once she was able to relax and breathe, she was able to rest.  It seemed like she was going to turn around..like she always had.  We even went out to lunch. But then she got worse again later that day.  I slept next to her bed.  We got up at 3 or 4 am again on April 4th. We tried to improve her breathing again, but it didn’t work.  I texted the hospice RN and said that I didn’t think she was going to make it to the appointment.  We gave her morphine and ativan and held her.

The hospice RN came and managed all the horrible aspects of death and dying…calling the funeral home, etc.  We just sat and cuddled together and told her how much she was loved.  She died peacefully in our arms that afternoon.

We have some friends in the cold tundra and I had texted them April 3 that Caroline was sick.  They texted to check in on April 4…I told them that she had died.  They came over with food and wine.  One friend drove over, left food and beer at the door, then texted that she had done that so we would have privacy.  I regularly got food packages at the door, both from my friends in Minnie and my family and friends from all over who mailed us food, cookies (Lori XO), beer, flowers, cards.  We love you and we appreciate you and if I didn’t thank you then, I want to say thank you now 🙂

Steve and I remember some of the next months and some we have mentally blocked I think.  We were going through the motions for a very long time.  We moved out of the cold tundra to the sunshine state. My husband started a new job and we have met some great people and have developed some wonderful friendships.

I promise it won’t be so long until my next entry.

Until next time….

I’ve been thinking a lot about this first trip to the ER lately. I remember it was unseasonably warm that day.  The sun was bright and the sky was a beautiful blue, which is unusual for Michigan in February.  February in Michigan usually equals cold, grey, gloomy, and snowy.

Caroline was getting sick, she was coughing some and we had to give her a breathing treatment the night before.  I knew she was getting sick so I went to work super early to round on all of my patients and be able to leave early if I needed to.  My babysitter went over to my house and picked her up and took her to her house (literally down the street).  We had been texting that day about how everything was going.  She was feeling ok with Caroline but she was definitely sick and wanted me to come home early.

I left work and drove towards home.  It’s a 45 min drive from work.  I decided to stop quickly to get some pedialyte because our sweet girl didn’t tolerate drinking milk when she was sick.  And she would only drink strawberry, don’t you dare try to give her anything grape flavored.

I was pulling into the store when my babysitter called. She said she was really struggling and she needed me at home NOW.

So I drove very fast and almost got into a car accident when I turned off of a dirt road too quickly and almost spun out…I remember feeling absolutely helpless.  My babysitter did not have any medical training but she is a smart person and I trusted her instincts.  I wanted to be there with Caroline and I couldn’t get there fast enough.  My heart was pounding out of my chest.  I needed to see my baby.  I needed to know exactly how bad it was.

And it was bad.

I walked into my sitter’s house and Caroline was in her car seat propping her up getting a breathing treatment.  She was working so hard to breathe.  Her color was terrible.  I lost count on her respiratory rate when it was over 50.  I was wigging out.  Yes, I know I’m a doctor. But I’m a mom first. So I called her pediatrician on his cell phone (perks of being a doctor) and explained what was happening and that I felt she needed to be seen.  He was actually working in the pediatric urgent care portion of the ER at that very minute–which was 4 minutes away from me.  He said he would meet me in the waiting room.  He did.  And he said she needed to go into the ER.

That choice was stressful in itself.  I trained at that facility.  I know most of the people in that ER. I knew the majority of the attendings, residents (some of whom were my interns on night call), nurses, and respiratory therapists.  I had not kept in touch with any of them.  None of the people working that day knew my situation first hand.  (Later I found out that one of the senior residents had heard something but didn’t really know everything).

So you have to picture me in scubs carrying my hot pink coach diaper bag over one shoulder, the infant seat in that hand, and Caroline in the other arm.  On a good day, Caroline did not look like a normal baby. This was not a good day.  She looked much worse.  So I’m loaded down with all of this stuff carrying a limp baby that is breathing over 50 times a minute through the ER door.  Faces looked up, vaguely registered that they knew me, saw Caroline, and everyone started to scamper.  Nurses and RT’s were moving.  In the ER, when you see a limp baby that is a really bad thing.  But I couldn’t just yell out, ‘Everyone calm down, she’s always this floppy’, even though I kind of wanted to.  Her distress was getting the attention it deserved.  People came up and took bags and baby carriers out of my hands and ushered me into a room.

The ER didn’t look any different than it did during my residency. Bright fluorescent lights, white tile that looked worn, and ugly forest green accents.  It still had the same early 90’s style curtains on the rooms and old 10 inch tv’s on metal arms attached to the walls. They brought me to room 5, which had a monitor and was a larger room.

They put her on a monitor and started breathing treatments and oxygen.  (I was starting to stress about how far I would let this go and how bitchy I was going to have to be.) Once she had a few breathing treatments in a row, she started to calm down her breathing and she was able to rest. She had 5 breathing treatments and was on some supplemental oxygen when we first arrived.  Once her breathing settled down, she didn’t need the oxygen to keep her saturation at 90%.

I went through everything with the ER attending.  To this day I don’t know his name because he didn’t tell me what it was. I explained her situation.  I gave him all of the paperwork I had, including an H and P I kept in the diaper bag that I wrote for the sitters incase they ever needed it.  I also had a notorized paper signed by both myself and my husband stating that Caroline was a DNR. I gave him that as well.

My partners at the hospital knew that I left early because Caroline was sick.  A few of them texted me to see how she was and I let them know we were in the ER.  I felt so blessed to have such a caring group of people to help me and support me.  One of my partners even wanted to come to the ER with me.  (If Caroline hadn’t turned around I would have needed him there with me.) Love you guys.

Of course the doc wanted to admit her for ‘observation’. I was so thankful I had such a good relationship with Caroline’s pediatrician.  I just told the ER doc to call him, discuss the case with him (the way he should do anyway), and if my pediatrician felt she needed to be admitted, knowing her disease and situation, I would accept that.

We went home later that night 🙂  I could do everything that she needed at home.  I could give her breathing treatments and pedialyte and anything else she needed at home.  We stayed up most of the night rocking in the  glider in the living room.

(Steve was out of town but I was able to speak with him, he did answer the phone and he came home early the next day).

I had been out of work since March.  Just hanging out at the barn, going out to eat with my husband, and going to my doctor’s appointments.

My due date was April 27 but I was still having a lot of contractions and my doctor and I were unsure if I would make it to my due date.  I was going crazy being pregnant.  I needed to deliver the baby.  I knew whatever happened, would happen and my husband and I would deal with it.

(One day I was watching Grey’s Anatomy reruns and Derek was talking to Meredith.  I don’t even remember what the story line was but he said, “Whatever happens, happens. Let’s just live.”.  I tried to follow that advice…even though it was from a TV show 🙂 )

I explained this to my doctor–that I needed to have the baby soon.  I didn’t even think I could deliver her vaginally.  I didn’t think I was strong enough mentally. I thought he was going to have to do a c-section.  I described my fears to him and we decided the best thing would be to induce me when he was on call so that he would be the person to deliver my sweet baby C.

He was going to be out of town the few days before my due date, so I sort of talked him and the MFM doc into letting me be induced before 39 wks. I was 38 weeks and 6 days, big deal.  But it was a big deal and we had to have special permission from the hospital board.  The sited reason was for fetal anomaly.

The days leading up to my delivery are still a blur.  I know that I went in and met with the nursing manager of the OB unit.  I wanted to make sure that she understood that my baby would be a DNR.  I needed to know that anyone in my delivery room would respect our decision and not resuscitate our baby.  (She had some nursing education on it prior to my admission.)

The night I went into the hospital I was terrified.  I was admitted at 11 pm.  The OB resident on call was an intern when I was a senior resident, so I knew her and it made me feel a little better.  I explained the whole DNR thing to her, and she wrote the order in the chart.

The nurse that was assigned to us that night was wonderful.  It was the best experience I think I could have had.

My induction went off without a hitch.  The resident put in the cytotec at midnight and everything started.  She checked me at 2 and 4 and I was progressing.  By 5 I was requesting an epidural.

The CRNA that did my epidural was excellent.  I had worked with her when I was on call as a resident and I knew she would do a good job. And she did–I didn’t feel a thing.

My doc came in about 6 am and checked me and ruptured the membranes (broke my water).  I was about 4 cm dilated.

The senior resident on the ward that day was a friend.  She went to med school with us and was an intern with us.  I felt very comfortable with her and everyone else working that day.

I slept in between being checked.

They woke me up at 12 pm and told me I was 10 cm and it was time to push…

My husband says that when our resident friend said those words the color drained from my face and I had a look of absolute terror.  I cried for about 30 seconds, my husband gave me a pep talk, I put my hands on my belly (I couldn’t feel the contractions otherwise, thanks CRNA lady!), and started to push.

The room was very quiet.  I’ve been in several delivery rooms (med school etc), and this one was the most somber one I had experienced.  My resident, my attending OB, my pediatrician, my nurse, and my husband were the only people in the room.  Usually there is excitement in the room.  From what I remember, it felt like everyone was holding their breath–unsure what would happen and how this whole pregnancy was going to play out.

My sweet baby C popped right out after 30 minutes of pushing.  Her APGARs were 8 and 9.  She was 5 pounds, 5 ounces and 18.5 inches long and she looked perfect.

The remainder of my pregnancy was hard, to say the least.

I was a physician, working daily in a hospital with 600+ beds.  Despite my partners and the staff in my hospital medicine office being overly supportive and sensitive, I still had people asking me about my pregnancy multiple times per day.

I was giantly pregnant and had gained a significant amount of weight, especially for someone with my 5’2″ frame…no wonder people couldn’t keep their mouths shut.

That’s what it felt like to me anyways.  People couldn’t keep their mouths shut.  I just wanted to feel normal.  I didn’t want to feel giantly pregnant.  I didn’t want to talk about my pregnancy–no matter how many cute old ladies asked me!

My husband could go to work and escape our nightmare.  He could just go about his day, operating, not having to discuss the pregnancy.  No matter how much I wished I could, I couldn’t just take off my belly like it was a piece of clothing and hang it in the closet while I was working, then put it back on when I was finished.  I desperately wanted to be able to work and enjoy it, but I couldn’t.  I couldn’t escape the well-wishers and conversations.

Most people thought they were being nice and making polite conversation.  But they weren’t.  They were making me argue with myself whether or not I should lie to them and smile and laugh even though I didn’t think I could–or tell them the truth.  The truth that I didn’t know if my daughter was going to survive the pregnancy, or, if she did, the delivery.

Twenty percent to be exact.  That is what we read.  There was a twenty percent chance she would need resuscitation after delivery. How do you even consider that your unborn child has a 1 in 5 chance of not living through birth???

My husband and I had a lot of intense conversations.  I’m sure they were very unique because of our medical background.  We decided that the best thing for our sweet baby C would be to keep her comfortable.  We knew her life, if she lived, would be a daily struggle for her. We decided that she would be a ‘do not resuscitate’ and that we would provide care to keep her comfortable.

By the end of March I was at my wit’s end.  I couldn’t stand talking to people I didn’t know.  I didn’t want to go anywhere new (restaurants etc).  I didn’t want to meet anyone new.  I didn’t want to talk to anyone on the phone.  I really didn’t want to be around anyone except for my husband, my maid of honor, and my friend/horse trainer. (And for those of you that know me, know that I have always been a very outgoing person.  I was even elected ‘most talkative’ of my senior class in high school.)

My relationship was (obviously) different with each of those people, but I felt like I could be myself with them.  And that meant the world to me.

My maid of honor was also my pediatrician friend.  She was so supportive.  She was also knowledgeable and was willing to go with me to appointments to meet physicians and discuss how to best care for our sweet baby C.

My friend/horse trainer was also very supportive.  She was just there.  I could go and hang out with her in the barn while she did chores (and I watched 🙂 ).  I couldn’t stand to be alone in my thoughts at home and my husband was at work–so I went to the barn.  We would chat about anything.  She never brought up the ‘elephant in the room’ unless I brought it up.  If I started talking about it, she would listen and chat with me. If I didn’t, we would talk about other stuff…mostly gossip from the horsey family ;).

My husband and I would eat.  Yes, eat.

We would go to our favorite restaurant, which used to be an old Laundromat.  We couldn’t stand to be at home.  We wanted to escape from our reality, so we went out to eat.  4-5 times per week.  Yes, per week.  I think that’s why I gained so much weight! We had appetizers, entrees, and always desert.  Usually a salted double chocolate chip cookie or vanilla ice cream with sea salt and olive oil (don’t knock it until you try it) or both :).  And we would have coffee–I had decaf with whole milk, he had regular with cream.

We were able to enjoy each other’s company and chat and laugh and sometimes cry.  We felt at home at our favorite restaurant (FL). I didn’t feel like I would be questioned and that I would be able to relax.  Heck, the bartender knew I was pregnant with sweet baby C before any of our friends did!

Despite all of the love and support from my family, friends, and co-workers, I had to stop working.  I couldn’t handle the stress of people asking me about my pregnancy or asking to touch my belly.  I couldn’t handle having to have the hospice talks with my patients. I volunteered to take the ICU patients–the sicker, the better–especially if they were on the ventilator–they couldn’t talk to me if they were sedated with a tube down their throat.  I know that sounds insensitive, but I couldn’t fathom talking with more people than I absolutely had to.

I was so stressed, I was having LOTS of contractions.  I had to stop walking around, pound a Nalgene of water, and lay down to get my contractions to stop so that I could drive home.

So my doc said it would be better for me, and probably my patients, if I stopped working.

I stopped the third week of march. I was due April 27.

I spent a lot of time at the barn.  And at FL, eating…

……

Because of this experience at the end of my pregnancy, I don’t ask people about being pregnant unless they start the conversation.  You never know someone else’s story…

To understand where I am coming from, I need to give a little background.  I grew up in a middle class family, went to college, met the man of my dreams. We moved to Kansas City for medical school together. We graduated and moved to Michigan for our residencies. We got pregnant just before I started my first ‘real’ job as a hospitalist. I was 29, healthy, and didn’t have any reason to think anything could be wrong with my pregnancy. I had all of the testing that was offered and it was all within normal limits.  I continued to ride horses and was the high point winner in my age group at the Color Breed Congress in Tulsa when I was 16 weeks pregnant with sweet baby C. Life was great.  I loved my job.  My husband was doing well in his orthopedic surgery residency and was applying to fellowships. And then, one cold February morning (February 21st to be exact…fat Tuesday), I drove to work, got out of my car, and slipped on ice. I managed to pull myself up and waddle into work ( I was about 30 weeks pregnant).  The secretary in my office looked at me when I walked in and knew something was wrong.  I burst into tears (stupid pregnancy hormones) and told her what happened.  She got me a chair, I sat down, and had my first contraction.  I was in labor. I went up to the OB floor of my hospital and checked in.  It was too soon for me to have my baby and I was starting to freak out.  I called my husband who was on an elective rotation at a trauma hospital 45 min south of where we lived…and I worked 45 min north of where we lived.  I told him I fell.  He said, ‘well you are ok right?’ and I told him that I was having contractions and getting checked out.  He still wasn’t that concerned. But then I told him the contractions were 2-4 minutes apart. Then he freaked out.  He drove up to my hospital in *less* than 1.5 hours. The physicians taking care of me did a good job.  They were able to slow my contractions.  They did an ultrasound to make sure I wasn’t having an abruption from the trauma of the fall.  There wasn’t any sign of abruption but they did find that I had polyhydramnios, which is too much amniotic fluid around the baby.  I was discharged home with instructions to follow-up with my doctor the following day. I went to see my doctor and we talked about the possible causes and what the plan would be. He arranged for me to see the MFM (maternal fetal medicine aka high risk) doctor and have a high level ultrasound the following day.  My husband was unable to go with me to the appointment because he had to work, so I went alone.  BIG mistake. You have to remember, I am a doctor.  I’m not an idiot.  And I know when you are doing an ultrasound and focusing on certain parts and that they don’t look right.  I could tell by the tech’s face. After the 45 minute long ultrasound that I knew wasn’t normal, I met with the physician.  He was an older man and was to-the-point.  He told me something was very wrong with my unborn baby’s brain.  He said he didn’t know exactly what it was and that we needed to do more testing. We talked some more but I don’t really remember what was said. I was given orders for labs and a fetal MRI and left the office in a daze. I called my friend who was a senior OB resident and told her what had happened.  I was hysterical.  She called my attending OB physician and he arranged for me to return to the MFM clinic that same day to have an amniocentesis. (An amniocentesis is when they use an ultrasound and stick a giant needle into your uterus and remove some of the fluid around the baby). I was supposed to go to work after that appointment.  I called the office and explained that something was wrong with my baby but I didn’t know what and that I needed to have more tests done.  I didn’t go into work.  I pulled over and called my husband.  He came home and we went to the amniocentesis together. That day started the weekly emotional and mental assault on my husband and I.  Despite being in medicine, diagnostic testing takes time and results take time.  It took 2-3 weeks for all of the amnio results to come back because they have to grow the cells for a week before they can do the karyotype and other testing. The week after my amnio, I went to have my fetal MRI.  We drove to Ann Arbor at 5 in the morning for the test because they wanted the fetus to be as still as possible.  Apparently babies sleep in the womb and the mornings are the best time to perform these tests (I had no idea). We waited to make sure the radiologist was able to see what he needed to see, then we left and got breakfast. That was a Thursday. I went to work later that day to work the ‘swing’ shift.  ( A very busy shift doing admissions in the ER).  I got a phone call from my attending OB physician who said he got the results of the fetal MRI.  I still remember what he said to me.  He said, “I have to be honest with you Susan, I had to hit the books on this one”. It was something so rare my doctor had never heard of it in his 30 years of practice.  So, I googled it.  BAD idea. I called my friend that is a pediatrician and told her what my doctor said.  He said my baby had lisencephaly and that it looked like it was Miller-Dieker syndrome.  My friend immediately said, “Don’t google it!”.  Too late, I already had. I left the ER in tears.  I went back to my office.  I called my husband. (Luckily he had switched rotations, It was now the beginning of March and he had arranged a rotation at my hospital so that he would be close to me during the end of my pregnancy). He came and took me home. We still didn’t have the official amniocentesis results, and with the MRI read, the MFM physician requested that they do the sequencing for Miller-Dieker syndrome. The following day I had an appointment scheduled with the MFM physicians in Ann Arbor to go over the MRI and to have a genetic counselor consultation.  My husband and I went together to the appointments.  I had an ultrasound before I was going to meet with the physician and the counselor.  I couldn’t watch the ultrasound.  It wasn’t a happy opportunity for me to see my unborn child.  I sat on the ultrasound table with tears rolling out of my eyes. The physician came in and went over the results of the tests, which we already knew.  And we also knew what it likely meant because we had been reading about MDS and lisencephaly.  It meant that our child might not live.  It meant that she would be severely mentally retarded, would have seizures that were so bad they wouldn’t be able to be controlled. It meant that she wouldn’t walk or talk.  It meant that she probably wouldn’t live more than a couple of years if she survived the rest of the pregnancy and delivery. Then we went down the hall and met with the genetic counselor.  We reviewed the tests, again. We reviewed what they meant, again. And then the counselor said something that I will never, ever forget.  She said, “In the state of Michigan you can’t terminate a pregnancy after 24 weeks.  But you can in other states. Would you like a list?”. I was appalled. I am pro-choice. But I could not fathom that.  I was 7 months (33 wks) pregnant! The following day was a Saturday.  It was the day of my baby shower.  At this point in my life, it was the worst day of my life. The following week, we got the official amniocentesis results showing a mutation in chromosome 17.  Our daughter had Miller-Dieker syndrome.

**edited to correct dates