A Story of Hope And A Mother’s Unrelenting Love
Sara England is a local Katy mama we’ve been following along with since we started this platform over a year ago. Something about this mama’s strength and faith drew us to her. As soon as we started learning about Sara, we learned about sweet, sweet Sam. He’s her third baby, a handsome boy, and he’s a micro-premie/NICU warrior! Sam also has down syndrome.
October is Down Syndrome Awareness month. Advocates use this month to spread awareness about ability, not disability. During the month of October, we celebrate people with Down syndrome and make people aware of their abilities and accomplishments.
We are so honored that Sam’s mama agreed to share Sam’s story with us. It’s a story of hope, bravery, faith, and just pure love.
There really is no love like a mother’s love. We continue to watch these two through the tiny squares and stories on Instagram and we’re constantly reminded that we as moms will walk through fire for our babies.
Sam continues to keep us smiling and Sara continues to keep us inspired. We hope you enjoy a look at their journey. This is Sam’s story.
A miracle from the start
Parenthood didn’t come easy for my husband, Pat and I. We knew we wanted a family, and my want to be a mother was an ache I felt deep down. We struggled with infertility and miscarriages. I had one before my daughter Maddie was born and two before my son Noah. It was truly some of the darkest days of my life. Once we had our two- Pat and I said we were done. We were blessed that God has given us two babies we fought so hard for and we were thankful… Then came #3… a total surprise. Obviously not a true surprise because we know how these things happened… but definitely not planned! About a week after my son Noahs first birthday something just felt off, and on a whim I took a pregnancy test and it turned positive instantly… as someone who lived in the ttc world, I knew that meant I was further than 4 weeks along! Holy Cow, we were going to have another baby. Because of my history of having miscarriages early on and the fact that I was taking any of the medications I was supposed to be.. We were terrified. To go through the pain of losing another baby was something we weren’t prepared for… but turns out there was a lot coming up that we weren’t prepared for.
By the time I made it to the doctor I was measuring almost 8 weeks. My OB asked if we wanted genetic testing (which would happen at 10 weeks) and we said yes- solely to find out the gender, I truthfully never EVER considered what genetic testing actually tested for- I’m a planner so the earliest I could find out the gender meant the more I could plan! Little did we know that our world was about to change forever. My OB called me a few days after our testing was done. Pat was traveling and I knew the news wasn’t good because she called me herself… the words she after that are still a blur…high risk…. 52% …… might have Down syndrome. My world crumbled in an instant.
The days and weeks that followed were very overwhelming for my Pat and I. We were already overwhelmed with the news and trying to understand what it would mean for our family when we went in for a 12 week ultrasound. We had genetic counseling first and then the ultrasound. During the ultrasound the doctor made it pretty clear that he would die. That “this was an unhealthy pregnancy, and there is no way he will make it”… my husband and I didn’t believe them. We saw a baby kicking with a strong heartbeat and we have never felt more confused. I’m thankful my OB referred us to a new high risk OB well versed in pregnancies with T21. Sam was monitored very closely throughout the pregnancy and everything was progressing well. I started to read books and dig into the special needs community I found on instagram. I continued to do the things to stay healthy, like working out because it was my only form of stress relief. I tried to enjoy it, but the truth is I was SO AFRAID of the future. What our life would be life, would I love him the same… I had all the fears that no one ever talks about. My check up 2 weeks before he was born was perfect, he was growing so well, he said see you in 4 weeks! Little did I know how much would change in those few weeks.
About 3 days before he was born I noticed decreased fetal movement. I always felt him in the evenings, but now wasn’t feeling him much at all. The next morning I took my daughter to school and picked up a donut and OJ hoping that would perk him up. But it didn’t. I became more worried and drove myself to the OB. The next hours went by in a flash. Sam failed his BPP, showing almost no amniotic fluid and low placenta blood flow. It was a miracle he was still alive, They tried to give me fluids, gave me my first steroid shot, but they needed to get him out.
Our miracle, Samuel (Sam) Patrick England, was born on January 4, 2018 at 25 +5 weeks weighing only 1lb 4 oz. His eyes still fused shut, his skin was translucent. It was the scariest thing I have ever seen. He was intubated right away in the OR, our neonatologist in the delivery was incredible. Him and 3 other people carried sam and all his tubes and wires to my face so I could kiss his cheek before they whisked him away from the NICU. Our NICU journey was one filled with the highest highs and the lowest of lows. He ultimately spent 147 days in the NICU. He overcame respiratory failure, being on the ventilator for almost 6 weeks, CPAP for 6 weeks and then high flow nasal cannula for another 6 weeks, retinopathy of prematurity, brain bleeds, and received multiple blood transfusions.
For 147 days I packed my bags every single morning and left for the NICU to be there in time for rounds, as a nurse myself, I wanted to know every single detail. I would get there in time to pump and then hold him if he was stable enough that day. My time was limited, so I sang to him, changed his diapers, read him books and stroked his hair. I told him about his siblings that were waiting for him at home. Having to leave him every day was the worst pain of my life, but I didn’t have a choice I also had two kiddos at home that needed me to be mama and show up for them. I would then leave around 1:30 to pick my daughter up from school. We would go home, play, snuggle, try to spend some quality time together, and then go to bed, and wake up and do it all over again. Looking back it was purely survival. I couldn’t really process it all because I just had to keep going. If I stopped I would fall apart, and I had to keep it together for my kids.
We eventually brought him home and it was the best day of our lives! We brought the NICU home with us with him needing oxygen 24/7, a feeding tube for nutrition and a very rigorous medication schedule to follow. But it didn’t matter because he was home. We have had numerous setbacks but Sams strength and determination is unwavering. He truly is the comeback kid. No matter what, he fights back.
Life after the NICU didn’t slow down Sams care plus our two other kids kept up busy, plus trying to keep Sam from getting sick was a full time job in itself! And It was extremely overwhelming! My parents helped us and our friends and family rallied around us. Looking back I have no idea how we made it through it all… To think about how far he has come now, just is unbelievable. We weaned the feeding tube around his first birthday and the oxygen early this summer! The day he was officially tube free was the BEST day of my life!
Because of Sam’s prematurity him having Down Syndrome was a “non issue” in the beginning because the goal was always we just need him to LIVE, we didn’t even really think about it because there were so many other things to worry about. We spent my pregnancy so fearful of Down Syndrome, but God wanted to show us what was way scarier and that is having a baby born at 25 weeks. Hands down 100x scarier than Down Syndrome. Now it’s just who he is, and I wouldn’t change him for anything in the world. I get asked all the time how we survived such a stressful time… There were several things- our faith, my parents, and the online community of moms that are like family. When you go through something like we went through, it’s a very unique situation and I felt the need to connect with women who were living the life I was living, even if we have never met in real life, they are some of my closest friends to this day! I’m also a big believer in self care. Working out is my saving grace because special needs parenting isn’t easy… it’s mentally and physically challenging so I always make sure that I am taking care of myself too. In order to be my best for the kids that means showing up for myself too. Pat is also really good about making me take a break and take time away to decompress.
The biggest lessons I have learned in this last 20 months aside from always trusting your instincts is about advocating for Sam and what is truly means to raise a child with a disability. While some days it feels incredibly heavy because it is all up to me, on the other hand, it also feels empowering because I know what is best for him. I have his best interest at heart and no one knows him like me. Which is what I tell myself every time a doctor or therapist said “he can’t do this” or “he won’t make it” he always proves them otherwise. All I need to do is just look right in front of me and remember the miracle that has unfolded in this last year. He has SURVIVED. And not just survived, he has thrived!!