“Weeks after moving to North Carolina from California we excitedly found ourselves expecting our fourth baby. This little one was very much wanted and would be the completion of our family. We decided to wait on a fourth child until we had moved out of CA. And because it took longer than we anticipated, there would be a six year gap between the last two kids. It didn’t matter in the least. Everyone was excited to have another girl joining our family.
Six months into the pregnancy our precious Kyle Ann died. No explanation. No known cause. She just quit living. My heart shattered into a million pieces. Over my loss. My husband’s. My kids. Fear for what I did wrong and despair I couldn’t keep her safe. Nothing made sense. We said our final goodbyes at her funeral trusting we would meet her again one day.
Three months after Kyle Ann’s death I was shocked to find myself pregnant again. And I was utterly sick. Never having experienced morning sickness with any pregnancy before, I had a momma instinct I was having twins. Sure enough my first ultrasound showed two beautiful beating hearts. Our boys. Our lights in the darkness. Our heartache of loss made gloriously whole by two new souls.
At 23 weeks 6 days, I started bleeding. I immediately went to the hospital where an ultrasound showed my cervix funneling in preparation for delivery, even though I had no contractions or other signs of impending labor. I was to be flown immediately to a high risk hospital but by the time the helicopter arrived to transport me the wind had picked up and conditions were now too dangerous to fly in. I ended up having to be transported by ambulance. My situation had just garnered med-evac attention and I assumed we were to be rushed, lights blazing and sirens blasting to the next hospital. For some unknown reason the medical personnel did not think my boys were worth rushing for. They obeyed the speed limit, waited at all the traffic lights, and never once turned on the sirens for us.
Once I arrived at the hospital I settled into my room for the long haul; weeks to months of care with bedrest to keep my boys growing safe and strong. I was 24 weeks the very next day. We had made it and I knew we’d be okay.
I used the bathroom. I walked my room. I had dinner. No one seemed too worried about us. I did keep asking when a doctor would get around to me because no one seemed to know where he was. A resident finally came in hours after I had arrived to greet me and to check my cervix. His face immediately gave him away. I knew his words were going to be bad news. He went pale, stuttered and said, ‘Ma’am, one of your baby’s is in your birth canal, feet first.’
People started flying in and out of my room at that point. I was no longer allowed to sit up. An IV was started, shots were given. And the OB on call finally decided to show up. He advised me I should consent to a C-section because the babies were coming. I begged him to give them more time. I asked for the Trendelenburg, to be inverted in the bed, feet higher than my head, so gravity would help keep the boys in longer. Steroids need 24 hours to fully take effect and the Trendelenburg would give the boys the time they needed to better prepare their lungs. As long as the bag of waters stayed intact they would be ok and the more time I could give them the better their chances. But the Dr. didn’t agree with me at all. He wanted to bring the boys into the world in a controlled surgery instead of under a rushed vaginal delivery if my water were to break. I felt deep down he was wrong, that there had to be better options, but he was so serious and adamantly opposed to the Trendelenburg. In his mind, the c-section was the best and only option of survival for my boys. I finally relented and consented. It’s a decision I will forever second guess and regret.
Shortly after midnight Liam was born, took a deep breath and gave the tiniest little cry you can imagine. His Apgars were a 7 and he surprised all of the NICU team when he arrived. He had just made it to 24 weeks and he presented more like a 27 weeker. Brady came quietly a few minutes later with Apgars of 2. We knew it was bad but we held out intense hope. I just knew God would not allow us to bury another baby.
Brady fought valiantly against his weak lungs. If only my exclamations of love, exhaled into him with every breath I took, could offer the breath of life and healing he needed. We had no choice but to pull his support. I told him to tell Kyle Ann how much I loved her and that I would see them again someday. I told him he’d given me a priceless gift. I would always be a mom of twins and it was a precious privilege to carry him for those 24 weeks. I told him I was so very proud of him for fighting so courageously for us but he could let go now. He passed peacefully in my arms.
The next days and weeks were a traumatizing blur. I had to plan a funeral while one baby was still fighting in the hospital. But what if Liam didn’t make it either? Should we wait just in case? I vacillated. Unbeknownst to me at the time, Liam actually was dying. He had developed a rare blood infection and had become septic. The day staff would say goodbye, sure he wouldn’t make it through the night, only to be shocked to see him still courageously fighting when they showed up for work the next day. I had only found out months later how sick Liam had been when I accidentally overheard a nurse saying they didn’t have the heart to tell me he was failing. Apparently, because I was already at his bedside daily, they didn’t want to burden me even more following Brady’s funeral. Obviously my fears of burying two children hadn’t been far off the mark.
Other than Brady’s funeral I wouldn’t leave the hospital. Because I was so scared Liam was going to die, I needed to be there, to hold him, and say my goodbye’s when it happened. I lived in paralyzing fear. Unfortunately, Liam’s NICU doctor didn’t help the situation. Every time I walked into the NICU I would come face to face with bad news. Her idea of telling me the bad news was to say she ‘wasn’t happy.’ This doctor was never happy.
What is a mom supposed to say when the Dr. tells you she’s not happy? ‘I’m sorry! I’m definitely not happy here either!’ She filled me with so much anxiety that family members would text me her location so I could avoid seeing her. I couldn’t take hearing about her unhappiness anymore.
One of this doctor’s particular worries was about Liam’s head. To be fair, there are quite a few things that can happen to a micropreemie’s brain but Liam had bypassed all of those. Still, the doctor worried about his future. Worried if he would be delayed. Worried if he’d be intelligent. She would tap her head and say, ‘It’s all going to depend on his noggin.’ As if living a purposeful happy life depended on it. Hope hinged on her happiness.
To say that doctor scared me is an understatement. She warned me of every little thing that could go wrong. I was constantly waiting for the worst to happen while thinking it couldn’t possibly get much worse.
For anyone with a micro-preemie, you know we have months of issues with acronyms to mark the time. Things like PFO, ROP, BPD, NEC, CVI, PVL, etc. They can all vary from mild to severe. Along with those diagnoses come months of healing and unknowns. Physical, mental, emotional, and spiritual wounds take their toll both on us and our babies. PTSD is a real condition for the parents of NICU graduates. It’s a wound that can remain raw for years if not decades to come. Sometimes the fallout from such a premature birth hits you totally out of nowhere and knocks the breath out of you.
So where are we today?
We are nowhere near where I or his doctors thought we’d be that’s for sure. We left the NICU right at Liam’s due date with a clean bill of health. Liam had one final scan of his brain the day of discharge and we were told he’d have some minor issues from his poor vision and some possible balance issues from a smaller than normal cerebellum. No big deal they said. He’ll walk. He’ll be fine. He’s a fighter. And he is. But no one saw the next hill we were getting ready to climb.
The premature fallout that comes completely unexpected? Liam wasn’t meeting any milestones. I knew something was wrong right away and it didn’t take long to get a diagnosis.
Liam was diagnosed at 6 months old with cerebral palsy.
Of the four main types, his is the least commonly diagnosed and then he is in a subcategory underneath that; choreoathetosis along with fluctuating muscle tone. His form of CP is pretty rare. It’s a type of cerebral palsy found in brain injuries unique to the basal ganglia. Except Liam’s basal ganglia is perfectly fine. He doesn’t have any damage to his basal ganglia. His type of CP does not match his brain in any way. His doctors and therapists call him an enigma. They are genuinely stumped. It’s why no one saw this coming. Liam doesn’t make sense. He should not be impacted in the way he is. Once he was diagnosed with CP our neurologist said, ‘Just to take him home and love him.’ She treated him like he was terminal.
Liam has very weak trunk strength making it impossible for him to pick up his head. He wears a neck brace for almost 24 hours out of every day. His days of fighting to survive in the NICU have turned into days of fighting to get his own hands to access his speech device or play with his toys. He fights against his own body every single day. Liam loves Harry Potter, SpongeBob, and AC/DC. He loves to go fast in his wheelchair. Liam is spirited and joyful. He exudes hope in a broken body.
In the pursuit of answers to our struggles and a life filled with disability and unknown, I came to a wonderful new perspective. I thought back to the doctor’s worries about Liam’s noggin and I realized, so what? So what if his brain doesn’t turn out to be PHD worthy? So what if he never develops past an elementary education? So what if he needs care for his entire life? Is that what his life is supposed to be gauged by? Is he only worth value to doctors and society as a whole if he’s academically stellar? What a horribly narrow view of humanity. Liam is still made in God’s image no matter his abilities. He is worth fighting for. He is worth serving. He has immense, intrinsic, value. Liam’s NICU doctor made me think his brain and ultimately his skills and intelligence were what was most important. But she’s wrong. Living and learning from Liam has taught us all so much more than we could have imagined. Because of her view it propelled me to write a Bible study on disabilities.
We have to change the image, beliefs and the discourse on disabilities. We need to shift the narrative. My son’s worth is not in what he can do. His worth is not tied up in what he looks like or in his IQ. We need to encourage and love what really matters. His unique worth comes from being fearfully and wonderfully made. I shouldn’t have to shout it loud for all to hear. But I can and I will.”
This story was submitted to Love What Matters by Jen McIntosh of New Bern, NC. Follow her journey here. Submit your story here. For our best stories, subscribe to our free email newsletter.
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