Everyone Has A Samuel

Hi, my name is Anna and this is my story. My life has not been an easy one, but I hope that by sharing my journey with you, you’re able to find a glimmer of hope in whatever circumstance you find yourself in. 

At the age of fourteen, I was diagnosed with PCOS after experiencing very painful menstrual cycles. At that young and tender age, doctors said it would be very difficult for me to ever get pregnant. But God…Isabella was born and my miracle baby is now fourteen years old. I thought infertility was a thing of the past and I would easily be able to have children in the future without any issues. Boy, was I wrong! 

My husband and I wanted to have more children and we began trying. When we weren’t getting pregnant, we began exploring fertility options. We met with specialized doctors and in 2012 we started fertility treatment. According to the experts, I had a series of issues going on in my body such as unbalanced hormones, obstructed tubes, cysts, adenoymisis and of course, PCOS. After various failed treatments and miscarriages; the doctors gave us the dreaded news: I’m sorry, there’s nothing else we can do. However, we do recommend IVF or a surrogate to carry your baby. 

I lost hope and got very depressed, there was no way we could afford any of those recommendations. I gained a lot of weight and became very angry, my heart was numb.

Some time had gone by and I began going to church. I noticed slowly but surely my hope and faith was increasing and I just knew that there was more to my story. God wasn’t finished with me yet. I didn’t know what was going to happen or what He was going to do but I just knew that there was more, and so my heart was open to receive whatever it was. 

I asked the Lord to take away the desire to have children if it was not His will for me to have more. I begged and pleaded to no avail. With time the intensity grew, I desired more. We looked into foster care and adoption but those doors closed, we were back to square one. The hope I once regained was slowly beginning to diminish. Was I ever able going to have more children? I mean, God hadn’t removed the desire. I didn’t want to feel it anymore if it wasn’t going to be a reality. And honestly, I remember having a very sincere conversation with God and telling Him that I couldn’t continue to live this way. I asked Him to help me let go those desires so that I can truly began to enjoy life. I found myself consumed with what I didn’t have that I wasn’t fully appreciating the blessings that I did have. As I began to focus on others and less about me, I felt as though a weight lifted off of my shoulders and I began to experience an undeniable peace come over my life.

By now it's 2018 and although the desire of having a child had not dwindled, I was content. I had completely changed my lifestyle to a healthier one, I lost weight and began to eat healthy and that made a huge difference. We revisited the fertility doctors and began another treatment, this time we tried one round of Clomid and it didn’t work. The doctor said that he would attempt a second round but if it failed, he would not move forward with any type of treatment. This was my last chance at getting pregnant; I was hopeful, I was scared. We tried again and guess what?! I did not get pregnant. I felt defeated, once again my body had failed. I had failed as a woman, as a wife and as a mother. Let me tell you, secondary infertility is a real thing! Many people don’t know how hard it is for a mother to have a yearning desire for more kids and not be able to. It hits different because your body was once able to bear children but now it’s unable to. Yes, of coarse I had my daughter and I was and am a great mother to her but I wanted to give her a sibling so bad. I felt intense frustration, disappointment and all of the emotions you can name. But of coarse, life continued and I was trying to do the best I could.

My body was asking for a break from all of the fertility meds, I needed to relax and just forget about all that I had endured for a while. I needed to rest and began to enjoy life again. I remember my husband telling me, “let’s go kayaking” and because we are outdoorsy people, we did. I later went to The Gasparilla Pirate Festival, a yearly large parade and a host of related community events held in Tampa. When I tell you I wasn’t feeling well, I wasn’t feeling well. I was feeling nauseous and vomiting a lot. But it couldn’t be possible, my period was due any day and I was feeling the symptoms of my cycle. The days passed, I was late and something told me to go get a pregnancy test. I did and it came out positive. I was in shock and I went back to the store and picked up more. I took twelve pregnancy tests that day and they all came back positive, I was finally pregnant! I had gotten pregnant exactly two weeks after the “failed” treatment. I took this as a sign that God was waiting for me to rest in Him so that He can work in me. The moment I finally surrendered and let it go, God stepped in to give me the surprise of my life, not only was I pregnant with one baby, but I was pregnant with two babies. I was having twins!!!!!

At twelve weeks doctors notice that Baby B was not growing normally, Baby A was on track and growing normal. I began to experience pre-term labor and was presented with the opportunity to terminate Baby B and I refused.

At fourteen weeks I began to dilate which was not a good sign. At this point I had already three episodes of three pre-term labor. They asked me again to reconsider and terminate the pregnancy, but once again I firmly refused. I told them to present to me other options such as bedrest or whatever else but abortion was not an option. I kindly told them to stop asking me the same question over and over again because by that point, I began to feel offended as they knew this went against my belief. 

A few weeks go by and at seventeen weeks, Baby B which by now we knew he was a boy was catching up. The doctors now felt hopeful and I was officially put on moderate bedrest. 

By this time, we are a little over half way of the pregnancy and at twenty-three weeks, I was due for a routine anatomy scan just to make sure both babies were developing well. I remember so vividly feeling super disconnected with the pregnancy and with the twins. I know this sounds absurd, especially coming from someone that so desperately wanted this but please hear me out. It’s not that I didn’t love the babies, I was scared to lose them. Having gone through multiple miscarriages, failed fertility treatments, constant disappointments along the way does something to you. I didn’t want to get my hopes up because there was still a small part of me that constantly tormented me with “what if they don’t make it”? So it was better for me not to fully connect with them in the event they didn’t make it out alive. What was suppose to be a fairly quick appointment prolonged in such a way that I knew something was wrong; and indeed something was very wrong. Again, this was the exact reason why it was hard for me to establish a connection with my babies, because “you just never know”. Baby B, aka Samuel was diagnosed with something abnormal with his heart. At first the doctor were beating around the bush and I just said, “please stop sugarcoating things and tell me what is wrong with my son.” “He has a hole in his heart and one of his main arteries are not where they’re supposed to be. Also, the size of his heart is larger than normal, causing too much blood to flow from his heart to his lungs. I’m sorry”. 

This news came to me like a ton of bricks, I was numb, I didn’t know how to react. You mean to tell me that my unborn child has a heart condition and the possibility of life outside of the womb is grim? I didn’t know how to handle this news. I was asked once again “do you want to terminate the pregnancy?” In the midst of the heartbreak and pain I felt, once again I declined and said, “let’s move forward”. I didn’t know how to move forward nor did I think I had the strength to put one foot in front of the other. However, I knew God would give me the necessary strength to simply keeping going..

They continued with the tests and I was told that both babies would potentially have Down Syndrome or Di-George Syndrome, regardless of the diagnosis, we were going to love them both and give them the best quality of life possible. After fourteen long and stressful days we received the results. Emilia and Samuel tested for down syndrome, the tests revealed that both babies had a 98% probability of being born with the syndrome. We accepted the news and my husband Kevin and I both vowed that our love for our special children would never change. They were coming into our lives to change our worlds and we were ready for it. 

At twenty-six weeks I was referred to fetal cardiologist so we can talk about what Samuel’s quality of life would be. The official diagnosis for his heart condition is Tretonolgy of the heart, which is Congentinal Heart Defect. I was told to be prepared for the worse once Samuel was born. The first thing they told me was that there was a high probability that he would not cry, making it an infant stillborn. And if he did make it, he would immediately be rushed for heart surgery. You have to understand that even before becoming pregnant, I was receiving bad news, one after another. My entire pregnancy is diagnosis after diagnosis and constantly hearing from the experts how Samuel was better off aborted. It was mentally and emotionally draining, not to mention the effects it made on my body. However, by the point, something clicked in me and I was reminded of God’s blessings! Despite of what the doctors were saying I was still pregnant, I had beaten the odds. My babies were growing and thriving. And honestly, what did it for me was hearing the news of one of my dear friends who had recently miscarried. She desperately wanted to become a mother and here I was pregnant with twins and I wasn’t even appreciating it. Something had to change in me and it did. Once my attitude changed, I began see a difference in the physical condition of my babies and even of myself.  I had purposed to enjoy the rest of my pregnancy with a heart of gratitude. I was growing two miracles inside of me and it was time to be thankful.

At thirty-six week I began to experience extreme back pains and I was immediately hospitalized. Due to severe anemia I received three blood transfusions that evening. I later realized that I was in active labor. I remember going to the bathroom and getting on my knees and pleading to God to please allow me to live, I didn’t want to die. My husband reassured me time after time that I was going to make it and so were the twins. 

As I was in the delivery room, the song that helped me through the night was “Reckless Love”. I found hope and refuge in the lyrics of that worship song. My personal prayer was that if God allowed my son to live, it was a clear indication that He would be with him at all times. No matter what challenges he would be presented with later on in life, he was going to be just fine. 

As the delivery process continued, things began to decline. I faintly heard the doctors say, “we’re losing her, we’re losing her”. I vaguely remember Kevin whispering in my ear how much he loved me and how he vowed to never leave me or the kids. With little to no strength left in me, I asked him to please promise to be there for the twins and to also take care of Isabella. I asked God for one more thing and it was to grant me the honor to hear both babies cry before dying. Baby A, Emilia let out a strong cry then there was silence. After three long minutes which felt like an eternity, I heard Baby B, Samuel let out a small cry, as of a kitten. I thanked God for answering my prayer. I was happy, I was at peace, I was ready to leave this world if it was necessary. Shortly after that, I lost total consciousness, everything blacked out.

But God! He knew it wasn’t my time yet, I woke up in the recovery room with yet another blood transfusion. 

After thirteen hours of giving birth, I realized I still hadn’t seen my babies and later that evening I saw Emilia. And I was finally able to see Samuel the next day.  Emilia was discharged seven days later weighing in at five pounds and Samuel was discharged twenty-eight days later weighing four pounds. The babies were born with no trace of Down Syndrome, the doctors later recognized that they made a mistake when reading the results. 

We thought the worst had passed and now we were able to enjoy our little family as normal as possible. However, two months later I began to notice Samuel’s skin darkening and his eyes were becoming yellow. I took him to the pediatrician on Dec 20th and they said he had jaundice which usually happens in the first month, not three months later. Doctors ordered bloodwork because they suspected yet another thing was wrong. When the results came in, the doctors told us to rush the baby to the hospital because his liver was failing and his bilirubin levels were too high. As a mother, naturally I freaked out. I cried out to God yet once more. I reminded Him of the promise He made by allowing Samuel to cry at birth, the promise was that He would be okay no matter what. God, why would you take him now? I was in total disbelief! After a series of tests to try and figure out what had caused it all, we had a genetics test for Allagille Syndrome done on him and he tested positive for it. AS is so rare that the main doctors didn’t even know what it was.

Fast-forward to a little over two years later, Emilia is a bright little girl who continues to meet all of her milestones normally. Samuel has a great medical team that is composed of sixteen doctors and nurses who all love him and have helped him tremendously since birth. His medical team is comprised of: Pediatrician, Hepatologist, GI-gatrointologist, Nutritionist, ENT, Optomologist, Neurologist, Physical Therapy, Occupational Therapy, Speech Therapist, Feeding Therapist, Pulmonoligst and four Nurses. It truly takes a village and I am grateful for my medical village who look after Samuel as if he was their own. 

Has it been easy? I think by now you can agree that it it hasn’t. Its been a bumpy road, but you know what? It’s been my road to journey through and I’ve learned to accept it and enjoy the road trip. This past March Samuel had his first heart surgery to close the hole in his heart. And as he grows, he will need multiple heart surgeries throughout his life to correct other issues. We still have an uphill battle but my faith is anchored on the One who has never lost a battle, God. He’s always been there for me and that will not change. Thankfully Samuel’s liver is improving and for that I am grateful. He also participated in an experimental medication for AS patients and the medication has been working great, it was recently approved by the FDA and it’s helping many patients with this condition. Just recently, he was diagnosed with moderate-high functioning autism with moderate delayed speech. And both siblings were also diagnosed with Sensory Processing Disorder, they are both receiving therapy and it’s helping a lot. 

I have now become a strong advocate for Congenital Heart Defect, it's an unexplained condition with no cure. But I will continue to fight for my son and for many others who suffer from this condition. My hopes is that one day a cure can be found. 

Before I end, I want to encourage you. Maybe this isn’t your situation but I’m sure you can relate to feeling hopeless at times. Every time I feel defeated, I turn over and look at my son. He’s my inspiration. Samuel has taught me that I am the only one that can put limits to myself. He has also taught me to slow down and smell the roses, that although the road is bumpy but it’s beautiful as well. He’s taught me to trust the process, to enjoy the journey because there are new mercies and grace for all of us each and everyday. He taught me to fight and fight hard. I have a Samuel to look at…..and so do you. Your Samuel can be your children, your spouse, your family and friends. Those people who have become pillars in your life are your Samuels. God has placed them in your path to infuse strength and inspire you to keep pushing forward.. Everyone has a Samuel, look for yours. Furthermore, not only do you have Samuels to look to, but you can also be a Samuel for others who may need one.

Friend, please don’t lose hope, don’t be so hard on yourself, don’t let the pressure get to you. If you’re battling with infertility, as hard as this may sound, enjoy your pregnant friends and trust that God hears the desires of your heart. If it is within His plans to give you a child, there is nothing in this world that will stop the plans of God for your life. It will happen, not in your time but in His time. And when it does happen, enjoy your full pregnancy not the last trimester like I did.

And lastly, to my ‘special needs child’ moms: No mother plans to have a special needs child. No one goes into pregnancy thinking they will have a Neurological Diversity (baby with medical needs). If this is you, lean into God and trust Him. If He allowed you to be the parent of that child is because He knew that you can handle it. You are strong enough, you are more than enough. God will give you the wisdom and the understanding to be there for your baby and to also be an advocate for him. God will provide the correct medical team in which you and your child will feel comfortable with. Don’t be scared to change them if needed, I had to do it several times until we felt comfortable with every single doctor and specialist that is treating Samuel. Don’t limit your child just because they have a label,  that is not what defines them. Trust God, trust yourself and trust your child because he will show you what he wants and what he needs. 

Thank you for reading my story and I hope this serves as an encouragement for you and whatever you’re going through. I’ll leave you with Ephesians 3:20 “Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.“ God went above and beyond and gave me more than what I asked, He can do the same for you!

Below are some photos of my miracle babies and also the song that kept me moving forward. “Reckless Love” still wrecks me when I listen to it/s a constant reminder of how much His love is for me— and for you too. I pray that it blesses your life as much as it has blessed me.

If my story has touched you in some way or another, I would love to read them in the comments section. We are here to upright and support each other.

With love, 

Anna