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Kaden and Kaysen


Kaden, baby with anencephaly

It was a cool day in the middle of February... We were going to our first ultrasound after dropping our two boys off with my mom.

As we were getting our ultrasound, the student sonographer said to us, "are you having twins?" We kind of hesitantly laughed and I said, "I don't know, this is our first ultrasound." She replied, "I see 4 feet in there and two sacs." Marcus and I just looked at each other and couldn't believe it. I was in tears about a minute afterwards. We already had two kids under age two, how was I going to handle two more at the same time? I was going to have to get a bigger house, a bigger car and probably be a stay-at-home mom for years. I was overwhelmed. Little did I know I was going to be hit with some major, life changing news shortly after.

My ultrasound started to take very long. The head sonographer came in and I said, "she thinks there's twins in there" and she said "oh, there is!" I just sat there in shock. They started talking to each other using medical terminology and said to me "just ignore us, this is technical talk." I didn't think anything of it. This should've been my hint that there was something wrong but I never imagined it would be us. We had two healthy, full term pregnancies prior to this. As they sat there examining the babies, I overheard "well, she's seeing Dr. Chaffin anyways." He is the high risk doctor and I was referred to him due to my blood clotting disorder.

He came in the room and introduced himself. He took over the sonographer's place and started to look at the babies. He said we were having twin boys and that they are identical. I asked him how he knew that and he said because they shared a placenta. How neat! The room started to get very quiet though and things became awkward. I said, "is there something wrong?" He said, "yes, very wrong." I was still trying to stop myself from crying from finding out there was two in there, I can't begin to tell you how much of a wreck I was after hearing this news. He somehow split the ultrasound on tv into two pictures and told me to look. He asked if I could see the difference. I said, "I don't know what that is but one looks put together and the other looks scattered out." I never imagined that was my baby boys brains that he was comparing on the screen. He said "that's because one is put together. Your other baby is missing his skull, the medical term is called anencephaly. He only has a brain stem. If your anencephalic baby passes away in the womb, his twin has a 30 percent chance of having a stroke." I had to have him repeat himself twice and by the time we made it to the car, I had already forgotten the term again because my heart was going 1000 mph. He then proceeded to inform me that we were immediately being referred to Cincinnati the following week and that my baby had a zero percent chance of survival.

Soon after, my heart quickly began to shatter in front of my eyes and tears flooded my cheeks. Of course I was completely uneducated on my son's condition because I had never heard of it, let alone researched it. I wondered how Kaden was kicking on the ultrasound and had a heart rate but wasn't going to survive. I later found out that babies born with anencephaly are in fact "incompatible with life" and are born blind, deaf and unconscious.

Coming to terms with this was devastating, gut wrenching and just absolutely heart breaking. There truly wasn't and still aren't any words.

Our ultrasound lasted over two hours that day. We left the appointment in complete silence. Once we made it to the car, Marcus put his hands on the steering wheel and his head down. We both had a complete meltdown and just kept asking why this was our reality. We hadn't told our families about our pregnancy and now we had no choice because of the outcome and having to travel to Cincinnati. We felt just about every emotion that day and it still makes our voices crack to speak about it sometimes.

The high risk doctor mentioned that it would be impossible for me to have a vaginal delivery. I felt like I could scream... I just didn't know why I had to endure this and I still don't. How was I going to have a visitation and funeral for my son if I could barely walk? I was already embarrassed and terrified to have a c-section. I had heard so many awful things about it and recovery would be too much for me with two toddlers at home. I couldn't be down for long. The reason for this was because baby A (Kaden) had to exit the birth canal first. With only having a brain stem, doctors were certain that he wouldn't get the signal to his brain that it was time to come out, like Kaysen would. This would cause me to push for hours and hours and still not be successful but also cause several other problems (on top of everything else) for my healthy baby and me as well. I was willing to do anything in my power to save Kaysen since he was already at risk for a stroke if Kaden passed in the womb. The doctors said that if Kaden would happen to pass, Kaysen would naturally think it's up to him to work twice as hard since sharing a placenta and blood vessels. He compared Kaysen to a pool with two pumps and said that it's like one pump going out and the other trying to do all the work.

With him being so little, I seriously prayed every single day and night that Kaden would just stick it out long enough for me to give birth since I knew the outcome. I wanted to tell my baby goodbye even if he couldn't see or hear me. I couldn't wait to finally hold him.

However, I was recommended termination numerous times but I couldn't fall asleep at night knowing one of my babies would be gone inside me, knowing he's gone and fearing even more of what he would look like after birth.

He was beautiful and always will be to me. I was blessed to hold a real angel after having a major abdominal surgery.

The doctors were just very worried about what could happen to Kaysen if I didn't terminate but I went with my gut. If nature took its course, then I guess we would see what was meant for us.

After driving myself crazy by researching useful websites and joining several groups to see real experiences, I realized that most babies with anencephaly have stayed alive when carrying this long and I wasn't as alone as I thought.

Fast forward to the week we were in Cincinnati. We had numerous ultrasounds, fetal echocardiograms, and an MRI done. We had to meet with a social worker, paediatric surgeon, genetic counsellor and a maternal fetal medicine doctor - M. H.. She truly was the most understanding, patient and knowledgeable doctor. As she was going through our test results and looking through the ultrasound, she told me that she found two cysts on my healthy baby's brain and showed me. At this point, I really felt like my legs and heart could give completely out. I didn't give her time to explain. My first thought was this couldn't be good.

Fortunately, I was wrong. These cysts typically disappear between 26 to 29 weeks BUT it is a sign of Down Syndrome. I was glad to hear that they could disappear but really? How could I handle a baby with down syndrome and losing a baby from anencephaly? I honestly just thought the world was out to get me at this point. She said the only way to determine if it was Down Syndrome was to do genetic testing. I wanted that done asap. Our MRI showed that Kaden's abdomen, kidneys and bladder were much smaller than Kaysen's. That also hurt to see. Everything just simply hurt. I already knew Kaden's head would be much smaller than Kaysen's due to his skull missing but seeing the difference in everything else too made it worse. We went the next morning and had the amniocentesis (genetic testing) done.

Our results came back that Kaysen didn't have Down Syndrome! I felt relief and a little bit of hope but overall, I was still devastated because of Kaden's outcome. It was like I couldn't find any positivity. No matter how busy I was at home with my two toddlers, this lived in the front of my head and was all I could think about every day. It still is, unfortunately.

I was a stay-at-home mom but I ended up getting a part time job in the mall. I had to do something to try and take my mind off of this.

May 9th, I had Marcus pick me up after work and we headed to the cemetery to talk to one of the guys who worked there. We had to pick out Kaden's plot as time was slowly creeping up on us. We have some family members that are buried at the same cemetery so this man already knew my family and chose to dig my baby's plot for free. He was such a genuine person throughout this.

Around 28 weeks of my pregnancy, I developed polyhydramnios. This occurs when there is excessive amniotic fluid. I was told that this could throw me into early labor if things continued in this direction. From where Kaden only had a brain stem, it only told him to pee and sometimes swallow. With him not being able to swallow correctly, the amniotic fluid kept building up. I quickly became a whale and I felt like my back could give out anytime.

Fast forward to June 1st, Marcus and I were just young, 21-year-old parents in the middle of the funeral home picking out our baby's casket. We were able to choose a necklace with his footprint, the design and wording on his casket and his beautiful little flowers. Once we seen the casket we could've dropped. Marcus and my grandma were in tears and I was too, but I had to quickly hold my cry in so I could talk to the owner at the funeral home and get his obituary finished. He was born 12 days after.

June 13th came around and I was at the hospital. I kept feeling sharp pains in my back that were excruciating at times. I went to the bathroom and could hardly get up, so I needed peace of mind. I was still in denial that I was really in labor. Once we got checked in at the hospital, I was told I was dilated to a 5-6. I said, "are they keeping me?" The triage nurse replied, "oh honey, we're having a c-section in 30 minutes."

I was already having labor shakes before this but now it was getting worse and I was wanting to cry my eyes out. I didn't want to say goodbye to my baby that has been inside me for months... I grew him and he was a part of me and his daddy. With him growing inside me, we knew he was alive and yes that could've changed at any point but he had stuck it out this long. We weren't ready to say goodbye.

I gave birth via c-section to my baby boys at 4:54 and 4:55 AM. They had me very medicated and I was still an emotional mess. I knew I had to give my surviving baby to the NICU and my other baby was going to pass.

When Kaden was born, he didn't cry. I was hoping to see his eyes open or hear a cry but I just got a picture where he has his eye a little cracked. We got 8 precious hours with him alive and had him spend the night with us in his cuddle cot, which is a bassinet with a cooling mat underneath. As time went by, we cried, took pictures and held him. We didn't want to let go and wasn't ready for the next day or days to come.

We had Kaden baptized and I still watch the video for comfort sometimes. We wanted all of our family to come say goodbye to him but with covid restrictions, it was a little difficult. The hospital worked with us for the most part though.

My doctor also lost his baby to anencephaly, so I was somewhat relieved to have someone who understood. He brought me a framed picture the next day that he had printed of Kaden. The little things mean the most!

Later that afternoon, I was told that the funeral home couldn't guarantee how good Kaden would look the longer we kept waiting. Kaden's body had already turned very dark purple on me and he became stiff as a board. I decided to officially let him go at 4:30pm. I never wanted to let him go and knew I wouldn't be okay. My baby was lifeless in my arms but I still couldn't fathom having to tell him goodbye.

My bereavement nurse wheeled him out of the room (my first hardest goodbye) and met the owner of the funeral home at the morgue shortly after. His viewing and funeral would be in the next couple days.

June 17th was Kaden's funeral. I was limping around, holding my stomach about every step from my c-section.

My mom and dad were watching their baby girl bury her baby. As a parent, from their point of view, it hurt from that aspect too. This was extremely hard for our families, not just us. I remember seeing the hurt in my mamaw and papaw's eyes and wishing I could take it away. Marcus looked like this took him out, which it nearly did me as well. I hated this so much for us.

During the visitation and funeral, we held Kaden both times. It was a little overwhelming and we had everyone there looking at us but we knew we had support. It's different crying in the hospital verses a funeral when you're the parent. We said our final goodbyes and will continue keeping his memory alive forever.

Kaden is loved and missed dearly. Since his passing we have gotten a new house, I started a new job and things have been looking great for Kaysen. He spent 9 weeks in the NICU, so that was also a very difficult and trying time. However, this unfortunate circumstance has brought some light to my life although I'll forever wish we had a different outcome.

Thank you for taking the time to read and if you are ever put in a situation where your baby is incompatible with life, regardless if it's anencephaly or not, please reach out to me! I would love to talk and think it would help us both.

I would also like to add that you should still offer support and check on your family and friends after suffering the loss of a child. It's a pain that never goes away, it's just stuck there. I thought things would get easier as time has gone by but for me, personally, it has only gotten harder. Maybe as the years go by, it won't be as hard to cope with but right now it still hurts undoubtedly.


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