Lainey’s Story

TW: Mention of LC

Background: I am 38 years old, my partner just turned 40. We have one son (Magnus) who just turned 6. He has been asking for a sibling for many years, but he is a handful, and we were not sure we could handle a second. Ultimately, we decided we did really want to be a family of 4, and we were going to run out of time, so in March 2023 i had my IUD removed. In May 2023, i was pregnant quickly. We told Magnus at the 6 week mark, and my parents and brother. A week later, we lost that baby, and i realized we were kind of naive for sharing the news so early. Magnus' pregnancy was so uneventful and perfect, I never thought much about losing babies. We had to explain to Magnus that the baby died, he was only 4 at the time, and he just kind of moved on quickly. My parents said stupid things like "you need to take it easier next time around" because I am a very active person. After that, i was pregnant again in July and December, ultimately losing both of those as well around the 7-8 week mark. I got frusterated and mad at my body for not being able to hold on to a pregnancy. I started therapy and got bloodwork done, all that came back "normal" even though i feel strongly that i have some sort of hormone issue… i didnt pursue it much more because in April i was pregnant again, and that one stuck…

Pregnancy: the pregnancy was filled with anxiety. HCG tests were anxious. i requested multiple ultrasounds, and each day counting up to those were nerve wracking. Every time i wiped i thought i could find blood…, i had an at home doppler but with an anterior placenta, i could never find the heartbeat. the NIPT came back and we took Magnus to build a bear for a gender reveal (he picked out a girl outfit and a boy outfit, and we gave the envelope to the cashier to dress the bear). He was so excited to be a big brother. He told us he "has prayed for this for YEARS" .. we opened the build a bear box, I was extatic that it was a girl. I have always dearly wanted a girl. I want to do her hair, buy cute flowerly dresses, do the Mommy and me things. Have a little mini me to hang out with while the boys go do their thing. it would bring balance to our family. I couldnt wait to see my partner with a little daughter. My therapist encouraged me to finally relax a bit, and start telling people. unpack the maternity clothes… start buying some baby stuff… this one is really sticking and its a reality. a week or 2 later, I told everyone at work. I brought in these adorable pink cookies and sent out a note to so many people (i work for a large company and have been there for 20 yrs, so i know a lot of people). I was so happy to share the news. I was so happy to buy cute litle pink onsies.

I was part of the Sept baby bumps sub, and everyone there was talking about their NT scan results. I had an ultrasound at 10 weeks, and had assumed that was the NT scan, but someone i suddenly had a doubt in me. I looked at the appointment write up and cound not find anything about the neck measurements. I sent them a chat and asked if this was an NT scan or not? they told me no, it was not… i was furious. I am of advanced age, why would i not want every single test there is to make sure everything was OK? why was it not even offered to me? they told me that i had to come in either that day or the next day, otherwise it would be too late. I went in the next day. They said everything looked good and i left, happy to see baby again. 2 days later, the doctor called me. she said she reviewed the ultrasound and that something came up abnormal. The choroid Plexus was "assymetrical" (wtf does that even mean?) I was so confused. i thought she meant something on my sweet baby's face was not symmetrical. I tried to book a private ultrasound to look in detail at her face. i could not find anythning on google about this.. but after some further research, i realized it was something in the brain. this sounds serious. I made an appointment with the MFM as recommended, but they wouldnt see me till 2 weeks later because "we can see in more detail then". My partner and me immediately knew we had to book an appointment at Mayo Clinic (a 4 hr drive).

Come 16 weeks, we made our way up to Mayo. They confirmed the assymetric choroid plexus and mentioned one is larger most likely due to cysts on it. This thing happens a LOT. since our NIPT came back normal, it most likely will go away, and it will most likely be nothing, but come back at 20 weeks.

20 weeks comes, and we make the 4 hr drive up again. I'm expecting to go into the Utrasound for a quick confirmation that the choroid plexus is now either normal or again, is nothing to be worried about. I'm hoping to get a good pic of baby since she has been stubborn at ultrasounds. we plan to go to the pool after my US. The US tech takes FOREVER. i mean, i was in there for like… an hour? hour and a half? I was starting to get impatient. is she new or something? why is this taking so long? a second tech comes in (oh, maybe the other one was in training and this is the real tech…) then, a doctor comes in.. and he tells me "i'm sorry, this is not good news. we see something abnormal on the Ultrasound" – the nurse asks me if i have someone that can come and support me. I call my partner and tell him to come in ASAP

Diagnosis: The doctors see a large cyst in the back of baby's brain. They tell me all sorts of medical jargon and im just numb. I dont understand wtf they are telling me. thank god my partner was there, he is so smart with medical stuff. I take notes… severe physical and mental disabilities… seizures… there could be a chance that its just shadows on the Ultrasound? schedule MRI.. schedule Amnio… talk to genetic counselor… possible termination… we booked our hotel room another night, and i was so lucky to be at mayo to get a fetal MRI and amnio immediately the next day. we received the MRI results a few hours later in the portal, but we didnt meet with pediatric neurology until after the weekend. I did my best to interpret the MRI results. Ironically enough, we have a friend that is a pediatric neurosurgeon that worked at mayo (what are the chances?) we discussed it with him and sent him the MRI results. He had a very grim and no-BS prognosis when he called us to talk about it. He told us he was so, so sorry. our child wouldnt know what's going on. she would need constant, every day support. she would never live on her own. I didnt believe him. I went to church and there happened to be a reading from the bible about how Jesus healed a man's daughter. "Do not fear, for she will be healed" are the words i read. i had hope. what are the chances this scripture would be there, on that day, when i was there?

i joined the Dandy walker parents group on facebook. I read so many success stories of people with DWS. so many were living happy, meaningful lives. some people even didnt know they had it till in their 40's! our baby doesnt have hydrocephalus, but i learn most likely it will come (80 percent of those with DWS have Hydrocephalus at some point) we would have occupational therapy, speech therapy, probably some education support… but why was our friend so negative? i dont understand. i read and re-read the MRI results. there's a vermis… its much smaller than it shoudl be, but that seems ok. the brain stem is ok. lots of things are ok! "rudimentary corpus collosum" – what the hell does rudimentary mean anway… i google it mutliple times. i'm mad at the MRI tech for using this stupid word. why cant you just say its there? or its barely there? or its not there? RUDIMENTARY?!?!

it hits me… rudimentary means its basically non existant. its teeny, tiny. what is this? corpos collosum? oh, its the thing inbetweent he two sides that let the two sides of the brain talk to eachother. i find out more research… apparently 20 percent of those with Dandy walker end up having ACC (agenisis of the corpus collosum) as well. i go back to the facebook group and search frantically for those with DWS and ACC as well. I was able to find 5 people. 1 boy was perfect. the other 4 were very very disabled. They need feeding tubes their whole life and are wheelchair bound. i already know everything going into our Neurology appointment that monday. I already know this is going to be bad news. I ask questions like "Is there a chance it can grow back in the future?" – no "is there any doubt? was the MRI blurry?" – no, it is so very very clear. Yes, people with DWS can end up being OK.. yes people with ACC can end up being ok…. but people with BOTH DWS, ACC (and who knows what else we havent found yet?) most likely will be very disabled. there will be mutliple brain surgeries. there will be seizures. There is a chance the baby wont even survive birth, she could choke on the amniotic fluid. she will need feeding tubes, she will most likely never develop mentally past the age of 6 or 7. This is exactly how old my son is. I know exactly what it is like to be developmentally 6 or 7 years old, because i see it daily with my son. Emotional outburst. you cant leave them alone, theyre not responsible. they will never have a job. and thats the best it would get. I knew we had to terminate. I knew in my gut. i could not bring her into life like this. Constant medical appointments. i just had an MRI, they are so scary. i thought about trying to convince my 6 year old to go into an MRI machine… he would cry, he would be so afraid. my sweet daughter would have to do this all the time. I booked the termination. My state does not allow abortions, the law went into affect at the beginning of the month. Can you believe the timing on that? My partner had his 40th birthday. I had planned a party, and we did our best to put aside our grief to celebrate him and see friends. it was a good distraction. I worked from home, this whole time, since finding out. I called HR, and realized I could have time off. I started documenting all my work so that my coworkers could cover me while i'm out.

Procedure: I'm so lucky my parents live next door during these months. They watched Magnus so he could go to his first day of school. My mom was so, so sad saying goodbye to baby, and to me. we decided on L&D. I wanted to hold the baby. My partner was not sure he could do it… but he said if i could, he can. We had our first appointment and we talked about the process. I took one pill, and we went to the hotel. We cried. We went into the hospital the next morning. The welcome desk lady asked us if we wanted a tour of the maternity ward (what? no. i dont want to see all the happy moms and healthy babies laying in the nursery, wtf). I was assigned a special room where i wouldnt have to walk past other rooms. I was assigned bereavement maternity nurses. They were amazing. They inserted more pills, and i would get them every 4 hrs. We talked, sat around, ate… we had the Chaplin come by and say a prayer that Lainey would come out without pain and struggling. Around 7PM thing started getting more intense. I had dinner but threw it up. i decided the pain was not tolerable anymore. I warned them that I have scoliosis, and with Magnus the anesthesioligist poked me 8 times and it didnt work. They brought in 6 anesthesiologists and an ultrasound machine. Unfortunately, they still couldnt get it to work. I was terrified of the catheter, but it was not painful at all. They pumped me full of drugs. at one point the nurse was a little concerned, because i forgot to keep breathing. she had to remind me to breath sometimes. i lasted till 3:15am, and finally got convinced to try the epidural a second time. They gave me a spinal tap, which was AMAZING. all my pain was gone. i relaxed and they sucessfully got the epidural in. i laid back down and felt slight pressure down there. i wasnt sure if it was just… a weird feeling with the epidural now working? i asked the doctor to check… she said baby was coming. The lights were dimmed. She told me to push a little, and i did, at like… half effort. not nearly anything close to pushing with magnus. at 4 AM, Lainey was born. My partner had a weird look on his face. he kept looking at me and at lainey. I didnt know why? whats going on? does she look really deformed or something? Oh, she came out in the sack. they cut the sack open and placed her in a blanket on top of my chest. I was so surprised at how perfect she was. i had googled images of 23 week old babies, and some of them were pretty undeveloped or malformed, and i was prepared for the worst. i noticed a strange smell, i guess the smell of amniotic fluid. She had some strange "hairy" stuff where her eye brows would be. They told me what it was but i forgot. i asked if she had been alive, she wasnt. She didnt suffer at all. she died sometime during the birth.

After: We held her for so long. a photographer, bless her, came at 5am to take pics of Lainey (free of charge provided by the hospital). She took pics of us holding her. I felt weird, normally you smile at pictures. but I didnt want to smile. they took Lainey to another room and took her picture. we rested some, but ultimately wanted to go home. We left at 4PM. Looking back, i cant believe i left the hospital within 12 hours of birth, but I just wanted to go back to Magnus and be home. I wasnt in a lot of pain. We picked out a funeral home and arranged for her ashes. I purchased an amazing urn on amazon, its in the shape of a little wooden heart. i brought clay to make footprint and handprint "ornaments". The nurse had plaster to make feet and hand molds. She made us little charms with her initial and a little bead angel. We received books (for Magnus), teddy bears, a memory box, a little toe-print sterling silver charm, lots of things. i am so grateful. I would rather have a baby to bring home than these things, but, it helped.

My boss sent out a notice at work, to inform people we lost the baby. She was so helpful. she asked me what i was comfortable with sharing and if she could share my address, how she can tell people to help me, etc. I have 8 weeks off of work. Calling HR was awful. I had to call and explain our situation, and i couldnt find the words without bawling. I have received so many cards. My partners work sent flowers and a wind chime. We received so much support. Church made meals. Im so thankful for our support system.

I made a facebook post. I didnt want to keep having the pain brought up when people ask me how the pregnancy is going. you could tell our pain in the post. so many people reached out. Most, dont know what to say.

Now: Its been almost one month. I'm focusing my energy on trying again, whether thats healthy or not, i dont know. I so desperately want to have a healthy baby. I take daily walks. I have therapy weekly. I stick to our routines. Its so nice to have a routine. I wake up and get Magnus ready. I have dinners ready. i take care of appointments and bills. i take time to reflect…. I look at Lainey's things regularly, it makes me feel close to her. I write her letters in her memory box. I get worried i will forget her. Her life is so meaningful to me, even though it was so short. Life is so unfair.

I come here…. a LOT.

I hope Lainey's story helps someone one day. If it does, please reach out to me.

Thanks for reading <3