How do you go about knowing your newborn only has a short time to live? Read this mum’s heartfelt sharing about caring for a baby with a heart defect.
Have you ever experienced waking up excited and expecting your day would turn out good but then it decided to give you a day so bad you’d probably end up remembering it for the rest of your life? That was us, my husband and I. Our story started 13th of December of the year 2017.
I woke up excited and ready to go to the doctor’s clinic because we were scheduled to have our congenital anomaly scan. This scan takes a close look at our baby inside the uterus to check if it is developing normally.
Learning About Our Son’s Condition
When It was finally my turn for the scan, I was very excited to know what our baby’s gender was. I didn’t have any negative inklings then. I was so happy to learn that it was a boy.
But then my happiness turned into worry when I saw the blank expression on the sonographer’s face as she busily checked the screen while carefully positioning the probe on my pregnant belly.
For a moment there I think she was probably contemplating how to tell me what she saw from the scan. But when she was done, she said,
“Your baby might have congenital heart disease. I advise you to have a foetal 2D echo to check what it is.“
Imagine hearing and knowing all of that from a mandatory congenital anomaly scan, my heart and soul just sank. After hearing that sad news, I quickly went outside the clinic and told my husband what had happened.
He tried to reassure me that everything was going to be fine and that I didn’t need to worry too much. I guess both of us were in denial at that point.
Fast forward to February 14, 2018. We celebrated Valentine’s Day at a heart doctor’s clinic. Went in for a foetal 2D echo and ended the day with a confirmation that our little boy inside my tummy has indeed a congenital heart disease. But to make it worse than it already is, the specialist told us that what he has is a rare type of heart disease that is called hypoplastic left heart.
A hypoplastic left heart disease is a rare type of heart defect that is present at birth. In this condition, the left part of the heart that normally pumps blood to all parts of the body is underdeveloped. To treat this kind of heart disease the patient must undergo a surgery or heart transplant.
Thinking ahead, we asked where we could get that surgery and how much will it cost us. They said that we could have it done abroad, most likely in the United States of America.
The other option is to let our son undergo a hybrid operation here in the Philippines done already by the best heart surgeons in our country, one of which is the one we consulted with.
But he was honest enough to let us know that out of the 8 babies that they had operated for that procedure, only one baby survived but still did not live to celebrate his one year of birth.
Aside from that, the cost of the procedure would be millions of pesos per surgery and our baby would need three for him to possibly get better.
From that day on, my husband and I had a roller coaster of emotions. From being hopeful to having so many fears, being in denial to eventually surrendering to God, and reminding each other almost every day to trust God in the midst of this tough trial.
And as we dealt with our emotional state, we also needed to think straight so we can decide what option is best for our baby boy and our little family.
Eventually, after praying and talking about it, my husband and I finally decided it was best not to push through with the operation that doesn’t give our son a hundred per cent chance to live, and instead, we chose hospital care so we can have more time to take good care of him.
Caring For A Baby With A Heart Defect
On April 6, 2018, I gave birth to a beautiful baby boy named Jaden Mikael, which means “God has heard” and “a miracle” because he was indeed an answered prayer.
The moment I heard his loud cry, I cried too, and my tears were brought by a mix of joy and sorrow because we knew that our time with him is numbered and that is how God wants it to be.
After I gave birth to Mikael, I only had a chance to see him quickly then we had to be separated from each other because he needed to stay in the NICU, and me in a separate room.
For almost a week, I had to endure the pain of my CS operation as I relearned how to sit up, stand up, and eventually walk, but this did not stop me from going to and from the NICU to check on him, carry him and kiss him every chance I can get.
My husband and I would take turns in doing that for a few days and when I was eventually discharged, our kind doctors gave us permission to have Mikael roomed in with us. The reason was so that we would be able to have more time with our son andn’t need to go home, and that for me was another answered prayer.
The hospital became our home. The nurses and the attending doctors took care of us very well. They were so patient with our questions and inquiries. They gained my respect and love as well as I saw how they work and take care of other people daily.
The small room we had there was also the witness of our daily struggles as first-time parents. The sleepless nights, the changing of soiled diapers, the taking turns in feeding, and making our son sleep.
All those things we went through while dealing with outbursts of emotions on a daily, as we are being reminded every day that our son is slowly weakening and that we are there because he is not being cured of his sickness.
In reality, we are counting hours or days until his heart just stops beating.
I cannot remember how many tears I shed back then; I cannot even count the times I prayed to God for a miracle and give healing to my son.
There are even days that I was so hopeful like the day his doctors told us the good news that we can go home because my son is healed. But reality sometimes hits you hard.
Despite that, I continued to believe in God, that he has a good plan as to why this is happening. So we just continued to surrender even though it was so difficult for us.
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As a first-time mum, I had never imagined myself in that situation – taking care of a sick dying child. It was supposed to be a joyful and momentous time of our lives, but God intended our story to be different.
To be honest, I came to a point wherein I would question God already as to why that happened to us. In my weak moments, I questioned my faith and I even blamed myself for what had happened to my precious son.
But I praise God for my husband. He was always there to listen, to take care of me, and to love me. At the most painful time of our lives, he would remind me of God’s goodness and love, and that these moments, no matter how hard it is, should not be the reason to let go of our faith in Him.
I know it was painful for him too. I feared that losing our son would break him, but he remained strong and calm. He became my strength when I didn’t even know how to be strong anymore.
We stayed in the hospital for 30 days. In those 30 days, we still chose to celebrate the life of our baby Mikael. When most parents mostly celebrate the first year of their baby on a monthly basis, we celebrated his life on a weekly basis together with the rest of the people who love us dearly – our family and friends.
Surrendering With Faith
It was a difficult time for me and my husband, but through God’s trials and tests he allowed us to go through, there are things God wanted us to learn and be reminded of a thing or two.
We knew that one of His purpose is to strengthen our marriage. He wanted to bring us closer together. The other lesson is to surrender, because when difficult situations arise, the reality is that we cannot battle it alone. We need to bend our knees, raise our hands and ASK GOD for HELP.
Lastly, God wants us to know that we are not alone in our battle. God knew who we needed – we need the company of our family and friends. They were God-sent! Most of them were physically there to give us the help and encouragement we needed. And some of them sent messages of prayers and love. It gave us the confidence to move forward with peace in our heart. God is indeed good!
May 6, 2018, our son Jaden Mikael who is born with half a heart peacefully passed away while he was sleeping. He left us when the sun had just come up. It was a beautiful quiet morning. We shed tears, kissed him, smelled his cheeks, and touched his hands and fingers one last time before we finally said,
“Goodbye son and welcome home to the Lord, your heart is now made whole.”
Fast forward to today, we were blessed with another two healthy and wonderful boys, Elliot Quinn, who is now 2 and Caleb Rafael, who is 9 months old. Jaden Mikael’s story may not have the ideal ending that we hoped for, but we know that God’s plans are better than ours. God is indeed a Redeemer!
“You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” – Genesis 50:20 NIV
This article was first published on the theAsianparent Philippines and was edited and republished with permission.
All about hypoplastic left heart disease
Hypoplastic Left Heart Syndrome (HLHS) is a rare congenital heart defect that affects approximately 2 out of every 10,000 live births.
This condition is characterised by an underdeveloped left side of the heart, including the left ventricle, aortic valve, and ascending aorta.
As a result, the heart is unable to pump enough oxygenated blood to the body, leading to a variety of serious health complications. Despite advancements in medical technology and treatments, HLHS remains a complex and challenging condition to manage.
Causes, symptoms, and treatment options.
Hypoplastic left heart syndrome (HLHS) is believed to occur during the early stages of fetal development, although the exact cause remains unknown. It is thought to result from a combination of genetic and environmental factors.
Some genetic conditions, such as Turner syndrome or certain chromosomal abnormalities, have been associated with an increased risk of HLHS. Maternal factors, such as maternal illness or exposure to certain medications or substances during pregnancy, may also play a role.
Symptoms of HLHS typically manifest within the first few days or weeks of life. Infants with HLHS often exhibit cyanosis (a bluish tint to the skin), rapid breathing, poor feeding, lethargy, and limited ability to gain weight.
These symptoms are indicative of inadequate oxygenation and poor blood flow throughout the body.
Without prompt medical intervention, infants with HLHS may experience life-threatening complications, including heart failure and organ damage.
The treatment for HLHS is a complex and multi-stage process. The goal is to optimize blood flow and restore normal circulation. The initial treatment typically involves a series of surgeries, starting with a procedure called the Norwood operation.
This surgery involves reconstructing the aorta and creating a new pathway for blood flow.
Subsequent surgeries, such as the Glenn procedure and the Fontan procedure, are performed at specific intervals to further improve circulation and heart function. In some cases, a heart transplant may be necessary.
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