*This story of Miguel, has been so lovingly and bravely shared by his mother Mia with the Butterfly Run community.
Kind, happy, easy-going, carefree, spontaneous and loud.... these are words often used to
describe me. I've always been a happy-go-lucky girl, looking at the world through rose-tinted
glasses. But that was before my youngest child died. Don't get me wrong, I am still that old lovable Mia… but the death of my baby has changed my outlook in life completely.
I love being pregnant, knowing that inside is a beautiful little baby. Pregnancy is something
that makes me feel connected to myself in a way that no other life experience does.
When I had my 6th pregnancy, I suffered from pre-eclampsia. My baby, Miguel, was born at 31weeks + 2days on May 16, 2021 at 4:36 pm, via emergency C-section due to my progressing pre-eclampsia. Early that day I felt him move less and less, and I remembered being told at my last prenatal check-up that he had stopped growing at
30weeks. Enough was enough, and finally, he was delivered weighing 2 lb 9.3oz.
After being born, he went to the NICU and learned how to breathe, how to maintain his
temperature, and how to feed. We celebrated every little milestone as he came off breathing
support at only 3 days old. Although there were a few minor setbacks, as is the nature of being in the NICU, Miguel was making fantastic progress.
When he was 1 week old I was so excited to visit him as we will have our very first skin to skin
experience. I felt confident knowing he was progressing so well and receiving the care
he needed. That day, when I arrived in his room, Miguel was crying. I had a feeling that something wasn't right. He looked incredibly irritated and in pain. The nurse brought Miguel to me, and I was felt such joy cuddling him for the first time. As I put him on my chest, he immediately stopped crying and seemed to feel better, but still moaning, and I could still sense that he was in pain. I called the nurse and told her that my senses were telling me that Miguel was not feeling well. The nurse then told me that he had been cranky the whole day, and had offered for me to change his diaper if I wanted. Again, this was a first time moment for Miguel and I, so I said yes to that opportunity. But as soon as I opened his diaper, I saw bright red blood in his stool. My heart sank. I felt sick to my stomach. It wasn't long ago when I felt so much joy and happiness with being able to carry and cuddle him. How could have things changed so quickly?
The nurse immediately called the doctors over, they took an x-ray and blood test to look for
possible infection. At that point, it was incredibly clear that something was very wrong.
Miguel began having increased apneas and bradycardia. His doctors placed him back on the
ventilator as it was clear that his frail body was fighting an infection. They started him on three different antibiotics to treat him while waiting for the blood test and x-ray results.
The doctor called us and informed us that as they suspected Miguel had Necrotizing Enterocolitis (NEC). His bowel perforated and he needed to get surgery as soon as possible. Even seeing how ill he was, I never thought it would get to that and felt sure the drugs would do the trick.
He was then transferred to BC Children’s Hospital. His surgeon then handed us the consent forms and told all the risks of the surgery – including death. That terrified me. But she also said that if they didn’t take him for the surgery he wouldn’t have any chance of surviving at all. We had to give him that chance. No words can explain my heartache and pure terror as I signed the consent forms. While I was signing the consent form they had put Miguel on a life support that caused him to vibrate at the same time that several breaths per seconds were delivered to him. My husband and I walked to Miguel. I gave him a kiss and told him that he could do this and that everyone was waiting for him at home. I told him how amazing I thought he was and that I could never explain how proud of him I was and how much I loved him.
He had a bedside surgery as he was too weak to be brought down to the operating room.
We were taken back to the Parents Waiting Room and were told that someone would come
and get us as soon as there was any news. We just sat there, praying, staring into space and
fearing the worst. I didn't know if I'd ever see my baby again and I WAS TERRIFIED! After 3.5hrs, around 5:30 am, the surgeon knocked on the door. The surgeon told us that they
had removed most of Miguel’s colon and a small part of his bowel, drained fluid from his
abdomen and formed a stoma to give the infected part of his bowel a rest. We were told that the operation had gone as planned but that we would have to see how Miguel recovers in the next few days.
His anesthesiologists came next and talked to us. He informed us that Miguel did very well considering his condition at the start of the surgery. He also said that he was then at the minimum level of medications to help with his blood pressure, meaning that his blood pressure was starting to normalize, compared to being hypotensive before the surgery.
He told us to get some good sleep as he knew that we have been awake since the afternoon
and that Miguel needed to see us strong because he was to draw strength from us. I thanked
his surgeon and anesthesiologist, and I was extremely happy about the great news. I told my
husband, "I told you he can do this!" I knew my son, he was strong and he was a fighter! We
finally had a few good hours of sleep.
Then, a few hours later around 9:30 am his doctor sat us down and I still remember the exact
words as if they were being spoken to me right now. “I am very sorry. Miguel is extremely
sick, he is the sickest baby in my unit and I am very very worried. I want you to know that I
never left his side from the moment he came as I want to know him better. The next 24hrs
will be a roller coaster of emotions. All my best nurses are with him and are working on him.
Is there anything we could do for you? Are there any people you want him to meet? We will
do our very best to meet all your requests.”
I told the doctor that I just spoke to his surgeon and anesthesiologists and they had told me
good news. Miguel's surgery went as planned and Miguel's need for medications had dropped significantly. I didn’t know what he was talking about. The doctor and his team then explained to me that Miguel did very well right after the surgery, and yes, his medication was significantly reduced to the point that he did not need it to increase his blood pressure, but that unfortunately Miguel’s condition regressed back to where he was before the surgery, and that the next 24 hrs was going to be very crucial.
I told the doctors that Miguel had 5 siblings who he had't met in person and that I wanted
them to meet him. Additionally, my husband and I wanted Miguel to be baptized. The doctors said of course. I also saw the social worker write down all of my requests. I asked the
doctors if I could see Miguel and they said yes, but warned me not to be shocked at the
situation. He told me not to be alarmed as there were many people working on him right then. At that moment, I was in denial. I was still clinging on to what his surgeon and anesthesiologist had told me, that Miguel's surgery was successful.
When we went to see Miguel, he was on another kind of life support. Miguel had been
sedated, was attached to multiple monitors, intubated and there were lots of IVs. He laid motionless in a neo crib. At that moment, I knew he would never come home with us. I broke down, I had never been that terrified and helpless in my life. And to this day I do not know how my husband was able to calm me enough to go into Miguel’s room not hysterical.
The next few hours, Miguel made some little progress. I began to have HOPE and chose to
fight through the pain. His BP began to increase, along with his heart rate, and everything
seemed to be heading in a better direction again. I was beside him, his tiny hands wrapped
around my pointy finger. I sang our song (Moonriver) to him, sobbing and singing, his eyes
moved and I felt his tiny hand squeeze my finger. The doctors saw his eyes move and
suddenly, the doctors and the nurses started singing with me, as if we were serenading
Miguel. As I looked at him, a tear fell on his eyes and I specifically prayed and begged God to show us how and what direction this was going to go. There were many back and forths of: Was I losing a baby? Or will I have a baby who was going to suffer his whole life? God gave us the answer. He allowed us to see that there were no significant changes with Miguel’s body and vital signs.
Around 3 pm, his doctors called us again and invited us to another room for a meeting about
what exactly was going on. Miguel's condition was not improving and he was in a critical
condition. Miguel was already at the maximum dosage of his medicines. They told us that
they had to respect what Miguel's body was telling them. They also explained to us that his
blood pressure and his heart rate were still below average and they were not seeing signs of
improvement. They also showed us his catheter, and feared that his kidney had been affected as blood came out of his catheter instead of urine. They explained to us that Miguel was severely septic and that his body was failing.
They gave us 3 options: 15 mins resuscitation, full on resuscitation, or comfort care.
The doctors explained to us that giving him resuscitation can do more harm as he was already intubated. His brain could lose oxygen and we would not know the extent of the brain injury until he got better, that is, if he even could. My husband and I devastatingly agreed that giving Miguel comfort care was the right thing to do. He needed his Mommy then more than ever, and I was going to love him with all my heart and with everything I had.
Shortly after, around 4 pm, his nurse brought our sweet baby boy to us so we could hold him
one last time. His siblings, 2 sets of grandparents and aunties were on their way to the hospital to meet him and say goodbye to him for the first and last time. We rocked him, told him over and over how much we loved him. I had our Spotify playlist on repeat. I told my husband that I did not know how much time he had left so we enjoyed and treasured our time with him.
His siblings then came to meet him for the first time. My heart broke seeing them see their
brother laying on my chest, motionless. But as his siblings were there beside him, his heart
rate and blood pressure suddenly started to rise. We were all excited to see his numbers go
up. In my heart I knew that Miguel was very happy to have met his siblings, grandparents and aunties. We also had video calls to our other family members, including his cousins, who
weren't allowed to visit him in the hospital because of COVID, and were not able to see him in person.
Around 8 pm I said goodbye to everyone and told them that I wanted to have some alone time with Miguel and his Dad, my husband. Again, we sang songs to him, told him that we hoped he knew that we never gave up on him and that we love him so much that's why we had to let him go. We told him over and over again how proud we were of him and how much we love him, and we sobbed as Miguel's spirit left his tiny body.
At 8:10 pm my little sweet darling went to heaven. I cried and cried and cried…. and wept and wept while I was carrying him lifeless. I do not know how many times I apologized to him for not being able to carry him full term. I apologized that my body failed him, that I failed him. I apologized that I could not protect him from all these complications. I apologized for
everything, and I remember the doctor, nurses and my husband kept telling me that none of
these were my fault. I was sooo angry and I screamed, “Why does it have to be my baby?”
What did I do wrong that God allowed this to happen to me? Why did God give me such a
precious gift to fall in love with, and to only then be taken away from me in an instant? I
thought for a second I was going crazy and I did not want to leave my baby in the hospital.
After a few hours, I gave him a bath, dressed him and again carried him and gave him so many kisses. I even took a nap with him. I left the hospital with my stomach flabby without my baby that once was there. My face was tear-streaked and pale. I didn't leave empty handed. I didn't leave all alone. I carried in my hands two beautiful hand painted boxes, a hospital bracelet, a lock of hair, stained blankets and towels. Soft tiny little ink-made hands and footprints, three sets of molded hand and feet and Miguel’s stained onesie and toque. No, I didn't leave empty handed, just empty.
Now looking back, I realized something. I told my husband, I thought I was giving Miguel
comfort care but really Miguel was the one giving me comfort care at that moment. Miguel
knew I wanted him to meet his siblings, grandparents and other family members so he held
and stayed until he met everyone. Until the very end he was still thinking of how to make his
mommy happy, and for that I am very grateful. We are very thankful and blessed that we had Miguel even for a short period of time. Those 8 days of his life were a HUGE gift to us. Miguel will forever be part of our family, and his siblings know he is our angel watching over us.
Necrotizing Enterocolitis (NEC) should never happen to anyone. As a mother, I want to raise
awareness about this devastating disease and to raise awareness about neonatal loss. Every
little thing I do, I do to dedicate to Miguel. I am always trying to find ways on how to honour
him. I found that crafting, making memorial candles, lanterns and ornaments for other grieving mothers has been very therapeutic and healing for me. Also, I started a new tradition this Christmas - a toy and food drive in Miguel’s memory. I told my husband that giving back to the community will be my gift for Miguel, and my way of parenting him.
I learned that giving back is very healing for me. We learned patience and compassion. We
learned that some things that seemed so important to us have now become meaningless. We learned to live in the moment, to treasure every memory we have with our loved ones and to be thankful for small little things and to always have gratitude. We learned to always be kind and sensitive to others because everyone we meet is fighting a silent battle we know nothing about. Everything we learned was taught to us by a great teacher who never spoke a word, never went to school and who weighed exactly 2 lbs 9.3oz - our little darling, Miguel.
To my sweet darling, Miguel,
Thank you for teaching us to value life at best and to not take things for granted.
Thank you for choosing me to be your mommy and thank you for loving me.
I loved you then. I love you now. Always did. Always will.
You are always on my mind. Forever in my heart. I will carry you.
I love you, my darling Miguel. Always and Forever.
Till we meet again,