“My husband Dan and I had two kids already: a four-year-old boy and one-year-old girl. We always wanted a third because both of us had grown up in families of three. Our wedding reception was on March 23, 2019, and then two months later, I found out I was pregnant! We were so excited. We had a few miscarriages in between our kiddos, so finding out we were pregnant again was a dream come true, but also nerve-wracking. Would this one stick? Or would we have to go through another loss? Hearing our baby’s heartbeat on the ultrasound each appointment was the most relieving thing, and before we knew it, we were having a boy! Both my husband and I lost two very important people in our lives—I lost my dad, Brad, and my husband lost his uncle/best friend, Tommy. Thus, our baby’s name was born—Thomas Bradley. It seemed super fitting for our last baby.
Everything was going fine, until one day we received some bad news off of my blood work. My sequential screening came back high for Trisomy 18. Trisomy 18 is also called Edwards syndrome. It causes severe developmental delays with birth defects in organs, and it is a life-threatening syndrome. It has no treatment and almost all babies diagnosed with Edwards syndrome pass away before birth or within the first year of life. This was devastating news. We only had two options: let it go and hope it was wrong, or get an amniocentesis to check. We already had two other kids, and having to explain their baby brother might die after birth was not an option. We had to know. So, we went ahead and met with a genetic counselor who explained all our options. We could get blood work, which was accurate some of the time, or get the amniocentesis, which would be 99% accurate. To us, the choice was clear. We went ahead with the amniocentesis.
This procedure is when they stick a long needle into the sac to withdraw some of the amniotic fluid to test it. It was very uncomfortable for me, but the procedure was quick. We all prayed and hoped this test would come back negative. We didn’t want anything to hurt our baby. A few days later, we got the results and Tommy was negative! He was healthy, genetic-wise. We cried, hugged, and thanked the universe for making sure our baby was okay. December 4th, 2019, I woke up not feeling great and just really run down. I wasn’t due for another three weeks (on Christmas Day, actually!), and I knew this was typical of the last month. My stomach really hurt, I had a headache, and just wanted to spend the day in bed. We also were getting a new roof put on, and it was so loud in our house from the men working above us. I can remember being so angry because all I wanted to do was sleep.
I hadn’t eaten anything for breakfast or lunch, and around 2 p.m. I started to feel really sick. My husband made me some lunch, thinking I was probably just hungry. I took one bite and ran upstairs to get sick. ‘I can’t eat babe; I am so sorry,’ I called down to him. ‘I’m just going to take a bath!’ I hopped into the tub where the pain just got worse. My stomach was really killing me. The pain was unbearable. I called down to my husband to bring up my phone so I could call my mom. ‘Well, do you think you’re in labor?’ My mom asked. I, never having a natural birth, because I was induced with my first two kids, didn’t even think about this. ‘I don’t know. What does it feel like? Because I feel like I’m going to poop out my uterus.’ I remember laughing, but was in so much pain. I called the OB, who said to go ahead to the hospital and go get checked out, just to see. So, to the hospital we went. We met my mom at the hospital, and she took our other kids with her while we headed up to labor and delivery. Once checked in, they put me in a room, hooked me up to a monitor to check the baby, and did a cervix check.
Well, wouldn’t you know, I was 4cm dilated and having contractions every five minutes! I was in labor, and Tommy was coming. The hospital wouldn’t check me into a delivery room until I was 6cm, so they told me to walk around the hospital floor and they would check me in two hours. We walked, and we walked, and we walked. Two hours is a lot of time to kill just pacing the delivery floor! But it worked! Before I knew it, we were in the labor and delivery room, and the nurse was prepping me for delivery. We had a pretty uneventful labor and delivery. Tommy was born early on December 5th, and he was only six pounds. He came out not crying and they whisked him away to check on him. Dan stood by his side the entire time while I looked on from in bed. What was going on? Why wasn’t he crying? His oxygen level was low, and he didn’t sound like he was getting a lot of oxygen in. They let me hold him for ten minutes, where he was visibly struggling to breathe or even cry.
The doctor came over and took Tommy and told us he was going to have to go to the NICU, but not to worry. And Tommy was gone. Dan and I were upset. We were stuck in this room where I just gave birth, but we had no baby. This wasn’t how it was supposed to go. Tommy was supposed to be with us. They transferred us to another room and told us to try to get some sleep. How? This was the part where Dan and I should have been snuggling Tommy, getting to know our newest family member. This is when we would normally have visitors and our kids would come meet Tommy. We didn’t sleep at all that night, counting down the hours until they discharged me and we could go see Tommy. When we did finally get down to the NICU, I burst into tears the second I saw Tommy. He was all hooked up to wires, under the lights, and we couldn’t even hold him. He was so small, on a feeding tube, oxygen, and warmers. My poor baby was unrecognizable.
We spent a week in the NICU, juggling going home and to the hospital, trying to parent every which way. Once he came home, we thought it was the end of it—no more long hospital stays. Tommy was home, and we were complete. Of course, this is not how it went. Every time we went for a check-up, our pediatrician would check his back because he had a sacral dimple. It was this little squishy area right above his butt crack. We were planning on having it checked out once Tommy was six months, but life had another plan. In February, our oldest son got really sick. He was running a 105 fever, coughing, and having trouble breathing. Negative for the flu, strep—just some nasty virus. We did our best to keep Tommy away from him, but a few days later, Tommy was sick. His breathing took a nosedive and was terrifying. Our pediatrician ended up calling the hospital and we were taken back to the ER the second we arrived.
Tommy was hooked up to oxygen immediately, as his level was in the 80s. He wasn’t allowed to eat until they figured out what was going on with him. They did every test on him, and everything came back negative—no flu, no strep. They even did a spinal tap on him, which is where they insert a needle into the spinal cavity and withdraw fluid for testing. This is mostly used to test for meningitis, which also came back negative. The only test which came back positive was RSV. RSV is basically a cold for adults, but in young kids, it can be deadly. We were admitted to a room until further notice. Here, Tommy was on oxygen and deep suctions every two hours. He wasn’t getting better, though, and we were ‘upgraded’ to the PICU. Tommy’s oxygen levels were dropping into the 70s and he needed more care. They put him on a CPAP with what they called a ‘scuba’ mask. It was utterly heartbreaking. He was in pain, crying, and we couldn’t do anything for him.
He still couldn’t eat anything. He was getting fluids via IVs and a ton of medicine. Tommy dropped down to five pounds during this stay and was diagnosed with failure to thrive. We had a feeding and swallowing specialist come meet Tommy, but it didn’t appear anything was anatomically wrong. He was put back on a feeding tube and a high-calorie formula. Once Tommy was able to breathe on his own again, we were moved back to a regular floor. Here is where the doctor wanted an ultrasound on Tommy’s sacral dimple. The ultrasound showed something in his spine, but it was inconclusive. We had to go for an MRI once he was six months old. After seven days, we were finally discharged, and Tommy was doing much better. We got a call a few days after discharge to let us know the ultrasound was reviewed again, and it looked like he had a large tumor on his spine. A tumor?! We didn’t know what to think. We were in hysterics thinking the worse—could our boy have cancer? What is this tumor? Is he going to be okay?
We were put it for an appointment for an MRI to further see what was going on. His MRI had to be sedated, so the whole process for his MRI lasted about a day. After his MRI results came in, we had an appointment with neurosurgery. This is where we met Dr. Kennedy. He explained to us Tommy has spina bifida, and something called lipomyelomengingocele, as well as a tethered cord. This means Tommy has a birth defect and a large tumor on his spine made up of fatty material. The nerves for his spine were wrapped around the tumor and woven throughout. His spinal cord was tethered to his spine, instead of free-flowing. So, Dr. Kennedy made a plan he was going to go into Tommy’s spine, untether his cord, and remove the lipomyelomengingocele. The surgery should have been roughly 5-6 hours. But Tommy’s was a complex case. His lipomyelomengingocele was LARGE and all the nerves controlling the lower half of his body were encased in it. Dr. Kennedy had his work cut out for him, but he was confident in this procedure. With a tethered cord, there really is nothing else you can do besides surgery.
On July 28, 2020, Tommy went in for surgery. We were nervous. He could come out of surgery not being able to move his legs, or he could have no control of his lower body. It was all unknown. Two hours, three hours, and six hours came and went. We were updated by the nurse every hour Tommy was stable, and it would just be a little longer. 11.5 hours later, and Dr. Kennedy came out to talk to us. The surgery was a success! It took so long because Tommy was such a complicated case, but Dr. Kennedy did it. He untethered the cord and removed as much of the fatty tumor as possible. Time for recovery! Tommy was in the hospital for just under a week, recovering. They put a drain into his incision to catch any cerebral spinal fluid that might need to leak out, and we were lucky—his drain remained empty. However, Tommy did lose his ability to urinate on his own.
Before we could leave the hospital, we had to learn how to catheterize Tommy ourselves at home to relieve himself. We took a class, and before we knew it, we were home-free. Dr. Kennedy is one of the best neurosurgeons I have ever met. He came to check in on Tommy every single day, and he was caring, kind, and answered the million questions we had. He spent almost twelve hours—TWELVE!—working on our Tommy’s spine and it was just incredible. We are so thankful for Dr. Kennedy. We slowly got into a new routine with Tommy home. Having a diagnosis of spina bifida did change a lot of things. We suddenly had a kiddo who has a disability. It’s an entirely different lifestyle. We got on a schedule with changing his back dressings, cathing him every three hours, all his medicines, as well as his follow-up visits.
There were still so many unknowns. Would he crawl? Would he walk? What were the things he was going to be able to do and what might he need more support on? It was a world of unknowns. I was scared for Tommy and our new situation, but grateful we had his life, and that’s what mattered. A few weeks after his surgery, we were changing Tommy’s diaper and getting ready to cath him, when—he peed on us! On his own! We sat there, laughing in amazement. He remembered how to urinate on his own! He did it! We had to weigh diapers for the next few days to ensure he was getting it all out, but sure enough, he was. Not long after, Tommy was crawling. We were all in tears watching him. They weren’t sure he’d ever crawl. But he did it. Tommy is amazing in every aspect and is truly stronger than most people I know. He is resilient and he is happy. He has been through so much in his little life, yet he has a smile that cannot be wiped off his face. His happiness is infectious to everyone he meets. He loves to dance, play with his toys, and he is a big fan of hugs. He enjoys playing in the bath, going to the beach, and his siblings.
He is an inspiration to all. We know Tommy may have struggles as he gets older. There is a high probability he will tether his cord again and need another surgery. He has MRIs every six months to check his back. He also has physical therapy because he still can’t walk on his own and he has weak ankles. He will most likely need a brace for his ankles, and we will assess the need for a wheelchair as he gets older. We have frequent blood work appointments, as well as appointments with urology for urodynamics testing, which tests his kidneys and bladder function. He has appointments with endocrinology regarding his bone health because he is prone to fractures (he had a skull fracture and an arm fracture in October 2020), and we do have to keep an eye on him because his immune system is weaker than average.
Tommy’s head circumference is also larger than average, so just something we have to watch every six months. Kids with spina bifida also may need shunts placed in their brains to help drain their fluids. Despite all this, we know Tommy can do anything he sets his mind to. He may be a person with a disability, but Tommy is capABLE of anything. He truly is. His happiness, his love of life, and his laughter is something that will forever bring smiles to the face of anyone he meets. He is Tommy Pickles, our angel baby who has shown us what it means to be grateful for everything. Nothing is too small. He taught us life is for living, despite the hardships. Tommy has brought our family so much love and joy, and he completes us. Since Tommy got sick with RSV in February 2020, we have created an Instagram page for him. We have joined the community of inclusion, which is full of people who support one another throughout their journeys.
We have made friends in this community, just from his Instagram and other support pages, such as Tiny Superheroes. This community is something I never thought I’d be a part of, but is something I am so glad we are. We have met people who have all sorts of different diagnoses but are breaking the walls down with what they can do. This community is nothing short of amazing, and every child with or without a diagnosis is special in their own way. To wrap up, I think it is worth mentioning just how amazing all the doctors, specialists, nurses, assistants, food service workers, EVERYONE we encountered at the hospital, the clinic, his regular pediatrician’s office, have been truly amazing. They are all angels among us and our son would not be where he is today without all of them.
And all of the support we receive from our families and friends. We are grateful for every single of them. We would have been lost without our friends and family constantly checking in on us, sending us texts, food, watching our other kids, coming to visit, and just being shoulders to cry on. Our support system prayed for us and sent us good vibes that were so appreciated. We still are incredibly thankful for everyone who checks in on us and follows us on our social media channels. We hope Tommy brightens their days as much as he does ours. We hope all our followers know each one of them is important to us, even if we never met them. Thank you.”
This story was submitted to Love What Matters by Jessica Raven of Philadelphia, Pennsylvania. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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