‘This is an unhealthy pregnancy. 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. We have never felt more confused.’

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“Our miracle, Samuel (Sam) Patrick England, was born on January 4, 2018 at 25 +5 weeks weighing only 1lb 4 oz.  He has been a miracle from the beginning. As someone who struggled with miscarriages in the past, we thought we were ‘done’ having babies because we didn’t want to push our luck. I was 8 weeks before we found out I was pregnant. We did genetic testing at 10 weeks solely to find out the gender, little did we know that our world was about to changed forever.

Pregnant woman stands outside smiling in wooded area with daughter and husband who holds son
Nicole Chatham Photography

Our results came back as having a high risk for Down syndrome. The days and weeks that followed were very overwhelming for my husband and I. We went in for a 12-week ultrasound and were told by the physician 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.

Pregnant woman stands holding son while daughter stands touching her mother's stomach
Courtesy Sara England

Thankful my OB referred us to a high-risk OB well versed in pregnancies with T21. Sam was monitored very closely throughout the pregnancy. I even had a checkup 2 weeks before he was born and 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 I had Samuel, I noticed decreased fetal movement. I usually 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. Samuel 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. He was born the following morning, eyes still fused shut. His skin was translucent. It was the scariest thing I have ever seen. He was intubated right away.

Mother cries as she lays in hospital bed looking over at newborn who was immediately intubated
Courtesy Sara England
Newborn lays in ICU under bright light with eye covers on
Courtesy Sara England

He ultimately spent 146 days in the NICU. He overcame respiratory failure, being on the ventilator for almost 6 weeks, CPAP for 6 weeks and then HF nasal cannula for another 6 weeks retinopathy of prematurity, brain bleeds, and received multiple blood transfusions.

Mother smiles in chair as she holds newborn in NICU in her arms
Courtesy Sara England
Baby with down syndrome lays in NICU holding finger of mother
Courtesy Sara England

He was 8lbs 3 oz the we went home! And it was the best day of my life!! We were only home for 3 weeks before he returned to the ER for elevated CO2 levels. He was immediately placed on CPAP and set to the PICU. The day and weeks that followed were scarier than our time in the NICU. Sam had a heart Cath to evaluate his pulmonary hypertension and receiving too much fluid…The PICU doctors tried to tell us he needed a trach, but I refused. I knew he was strong, and I knew if they just gave him TIME he would get there, as he always had.

So little by little he improved and was able to wean back to his 1/2L of nasal cannula. We left the hospital with bipap for night support and cannula for day support and a feeding tube to help him with nutrition. Suddenly our house turned into a rehab facility. 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. He now tolerates being off nasal cannula for an hour at a time, hopefully being able to wean that in the spring and he no longer has a feeding tube either!

Oldest sister sits in chair with brother with down syndrome in her lap beside her other brother
Courtesy Sara England

One of the biggest lessons I have learned this year is about advocating for Sam. While it still feels heavy because it is all up to me, 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 proved 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! He is strong, he is brave, and he WILL get there, in his own time and his own way!”

Little boy with down syndrome lays on his stomach smiling
Courtesy Sara England
Husband and wife stand in home with their three children all dressed as the family from the Incredibles
Courtesy Sara England

This story was submitted to Love What Matters by Sara England of Katy, Texas. Follow her journey on Instagram here.  Submit your story here, and subscribe to our best love stories here.

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