“I grieved Hudson many times throughout my pregnancy, but I am lucky to say that I have been able to celebrate all of him so many times.
I first grieved him when I found myself unable to get pregnant because of PCOS (Polycystic ovary syndrome). I celebrated him when those two pink lines finally showed up on that important plastic test in May 2018. Then, I grieved him again when I was sent to the Maternal Fetal Medicine Center and was told in a chilly consultation room that I would have to ‘terminate him’ because he had implanted too close to my C-section scar tissue. I was informed that there was no chance he’d move further down and I wouldn’t be able to continue with the pregnancy.
At my next follow up appointment, I celebrated him yet again when a different doctor told me that I could continue with the pregnancy because they had read the results wrong the first time. We were ecstatic! Then, things took a turn for the worst at his 20-week anatomy scan…
I can still very clearly remember the excitement leading up to this day. We would finally be able to find out whether we’d be having a boy or girl and wanted our other two kids to join us in this experience, so we brought them along. Something felt ‘off’ when we were finally being seen by the tech and she was taking an awfully long time to get her images, but I brushed it off.
We didn’t get to find out the gender because he was not cooperating at that time (but then again, what kid does?). Then, the doctor and her student walked into the room with a blank look on their face. She immediately starts the conversation with, ‘There are some concerning things with the ultrasound. His ventricles are measuring large. I believe there is a defect with his heart because I can’t see one of the chambers in the images. There might also be a defect with his brain because one hemisphere looks like it never formed. His left hand also comes to a sharp point leading me to believe his hand didn’t form.’
At this point, she became an echo in the background because I had to cope with all of the information she tossed at me in order to not have a breakdown in front of my husband, kids, and these two strangers in the room who I just met that day. She asked if we understood anything that she was saying to us and I remember my husband looking at her and saying, ‘I don’t understand anything you said because I don’t understand the meaning of the words that you’re using. Can you dumb it down?’ She did a poor job of ‘dumbing’ down the explanation and my patience was on its last string. I cut in and said we were going to process it and contact her with further questions. So, off we went.
Two days later, she called me and asked if I had time to speak – not face-to-face. I thought to myself on how odd it was that she wanted to talk to me via phone but I went ahead and did it anyways. So, she said, ‘I believe he has VACTERL based on the findings of the ultrasound. VACTERL means that he has a defect with almost every major organ. You can Google it if you want more information on it. We will do more testing. Also, you can choose to terminate the pregnancy – but Minnesota only allows termination up until 23 weeks and 4 days. You’ll need to decide, soon. We can review the different options available. Oh, you should try to find a babysitter for the next appointments. Usually you wouldn’t bring kids to an appointment like you did before.’
I said ‘okay’ and moved on, but the real me was thinking about who the hell she thought she was calling me to tell me this news over the damn phone then following it up with telling me how to parent. Sure, I’m pretty young, but I’m not dumb. After getting over my ‘hissy’ fit, it hit me like a blow to the belly.
I laid in bed all day and all night for an entire week, only getting up to shower. With sleep, I could escape the tears and deep sadness. The worst part of this pain was waking up around 2-3 a.m. every single night with a deepness and heaviness in my heart that I could never find the words to explain. It feels like your heart is literally breaking into pieces that each weigh a ton and those pieces of your heart are suffocating you at the same time. Eventually, I had to go back to work…and to see the doctor.
The nightmare with this doctor just got worst from this point on. She took it upon herself to take over my care after confiding in my primary that I didn’t care for her mannerism or their office. After Hudson’s ECHO scan came back confirming he had all chambers of his heart, she changed her diagnosis from VACTERL to Hydrocephalus.
She said that because he had severe hydro, she was confident that he would never be able to walk, talk, feed himself and he’d have severe developmental delays. She went as far as telling me that one of her previous patients in the same scenario chose to continue her pregnancy and when they delivered the baby, it’s head was so big that it couldn’t even fit into two of her hands together. She followed this up by telling me that I could get an MRI of the baby’s brain and then she, herself, would discuss the results of the MRI with me.
I remember thinking to myself that this ‘doctor’ must have some sort of agenda to be pushing termination as hard as she was and what a RUDE lady she was telling me the story of another mom’s heartache to scare patients into doing what she wanted them to do.
Even though I had so much doubt and questioned everything she was telling me, I was still scared to stand up to her and tell her she could be wrong because she was the one with the degree and the medical experience – not me. Then, it hit me – why is she the one telling me everything?! She couldn’t have possibly specialized in every medical field. Also, what was her problem with pushing termination on me so hard?! She was literally using scare tactics to push me into termination. I needed to start advocating for my healthcare and my baby’s! I could feel him kicking me every day – surely this wasn’t just a coincidence.
With one week left to decide, I contacted Children’s Hospital of Minneapolis with a pleading e-mail. I asked them to please see me for a second opinion because I did not trust this doctor or her medical advice. Shelley reached out to me THAT day and scheduled me to see Dr. Snowise for another ultrasound. The ultrasound revealed the same diagnosis, Hydro, except Dr. Snowise delivered the news with empathy and for the first time throughout the rollercoaster of this pregnancy I heard, ‘I’m so sorry.’
Not once at the previous clinic did those doctors empathize with me or apologize for the news they had no choice but to deliver. Then, we met with Dr. Petronio. He told us that although our son did indeed have severe hydro, he believed in him and in all of his patients. Yes, he would likely have developmental delays but there were programs available to him to help us through it. He allowed us to ultimately make the decision and said that if we chose to move forward with the pregnancy, he had a lot of confidence that he would be alright. We finally felt some peace and sense of calmness.
We didn’t decide right away. In fact, we didn’t decide until Hudson came to me in a dream. I hadn’t had a good night’s sleep for a while because of all the things that were going on, but I did that night.
That night, I dreamt that I arrived at the hospital to terminate my pregnancy. My belly was big and firm. I was standing alone in a room waiting for the doctors to come and suddenly my belly was gone. I remember the overwhelming amount of sadness that came over me but the guilt…the heaviness of the guilt was truly going to kill me. Then, I saw a bed in the left corner of the white room. There was a big window and the sun was shining so brightly into the room. A baby. There was a baby with some IV’s in him lying on the bed. I went over to pick him up and just held him. No one had to say anything but I just knew it. He was my baby. My baby who I had cried an ocean for. Though strange, he said to me, ‘Mommy, they took me out. I was trying so hard to tell you that I’m here. I’ve been here all along. That’s why I’ve been kicking you so hard. I’m right here.’ Immediately, I woke up with tears in my eyes and told my husband that we were going to move forward, no matter what the results came back with.
Shortly after, I went on bed rest at Abbott-Northwestern and delivered Hudson at 30 weeks. He was born with Hydrocephalus and a Radial Right Club Hand. He went under for his first surgery at three days old and again at 3 weeks old. He battled NEC while in the NICU and was lucky to come out with no additional surgeries. He finally joined us at home on January 12th as our last baby.
He is such a strong fighter and I am so proud of him every day. He is meeting all of his milestones and even though he has PT and OT every single week – he continues to amaze all of us with his ABILITIES. His disabilities will never define him or what he is capable of.
To any mama’s and papa’s out there who may be going through the exact same thing I did, I am so sorry. I am so sorry that so many people these days have lost their empathy skills. I am sorry that you’re here today but know that you are where you are today because you have the strength, the capability, and the love to carry your tribe forward. Don’t ever be afraid to advocate for your health or your child’s health. Doctors can be wrong, too!
To any mama’s and papa’s who are afraid of what the future might look like after receiving a disability diagnosis – there is beauty in the unknown. The unknown can definitely be scary but it also comes with so many wonderful surprises. Things you would have never cared to notice before. Experiences that you would have never appreciated before. Situations that teach you how to become more patient, more loving, more willing, and more everything. It’s okay to grieve the dreams that you had for your child.
To any mama’s and papa’s who spent time in a NICU, you are so strong. So much stronger than you know. The strength that you find each day to commute back and forth to the hospital to do your cares and give your baby skin-to-skin time is immeasurable. The fact that you are still losing sleep when your baby isn’t even home yet because you are pumping and/or breastfeeding is just a small measure of your commitment. Learning how to take care of your baby with the many cords and IV’s, stimulating your babies from a brady, and holding your breath when it’s finally time to start feeding by bottle is just a small glance at how amazing of parent(s) you already are.
To all mama’s and papa’s, you’re doing a wonderful job regardless of what a textbook says. No book could ever truly predict what you or your child are capable of. Who are we to say what is ‘normal’ anyways?”
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