Did I mention that Jonathan shares a due date with his cousin?
Here’s a fun video from our joint Gender Reveal
(My sister hand makes the gender reveal footballs www.etsy.com/shop/Babykees )
Did I mention that Jonathan shares a due date with his cousin?
Here’s a fun video from our joint Gender Reveal
(My sister hand makes the gender reveal footballs www.etsy.com/shop/Babykees )
When we shared our situation on Facebook I felt that I should include the cause (or lack thereof) for Jonathan’s heart defect .
Each doctor we have met with has confirmed that this is not caused by something I did or didn’t do during the pregnancy. It isn’t caused by age or genetics. As one specialist put it “for lack of a better medical term it is simply ‘bad luck.'”
Danny wondered why I felt I needed to explain this. It really is a private issue and does it really matter what the cause is?
Well, it mattered to me. I think as parents, especially as moms we feel responsible for everything that happens to our children. We take responsibility and ownership for things that don’t belong to us. Since I am already a mom to a special needs child I am intimately and well acquainted with this burden of guilt.
As humans we want to know “why?” Sometimes
we need we want someone to point a finger at, someone to blame. Do I want to know why my oldest son has disabilities? I sure do. Ultimately though, I always end up pointing the finger at myself for his disabilities.
Many years ago when it was determined that he needed glasses I was devastated. Out of all of the many other issues he had going on, this seemed relatively minor. Friends couldn’t understand why it was such a big deal but one friend got it. She said “it feels like one more crappy hand you’ve dealt him from the gene pool.”
If the reason he is disabled is genetics then I’m the one who loaded that gun. If it was birth trauma, well I’m the one who gave birth to him. Maybe I should have picked a different doctor, maybe I should have screamed louder over things that didn’t seem right to me. Maybe his disabilities are simply the consequence of me having a baby out-of-wedlock.
It sounds ridiculous and irrational. However illogical it may seem though, those are the thoughts of guilt that lurk in the back (and sometimes the front) of my mind and heart. They haunt me. If I didn’t have enough trouble forgiving myself for the role I must have somehow played in my son’s disabilities, all of those thoughts are also things that other people have suggested or accused me of over the years.
We never think it could be us who has the disabled child and fortunately for most of us it’s true. I used to think it too. I suppose I imagined that people who had disabled children were somehow special. They were somehow prepared for and somehow always had an idea that it would be them. Why? Because it generally never occurs to someone, “hey some day that could happen to me, an ordinary person.” So we try to make sense of why something happened to someone and we come up with the only logical conclusion, “they must have done something to cause this,” or even “they must have done something to deserve this.” Because if they didn’t do something to cause this; if it was truly a random occurence then that means we have no control. It means it could happen me.
I have no control over life and it could happen to me. Bad things happen to people for no good reason at all and that’s a little too scary of a thought to consider, therefore they must have done something to earn this burden.
On my own I’ve had these thoughts to explain the reason for bad things happening to my family. I already carry this burden of guilt and responsibility on my own without needing anyone else to point fingers at me.
Now I have another son who is being born with a disability. I am devastated. I feel responsible. My only job thus far in his life was to create a safe environment for him to grow healthy and strong, but somehow I have already failed him. Clearly I am not meant to bring life into this world, because I keep messing it up. What did I do wrong? I was even brave enough to ask the question aloud “what did I do wrong?” I have asked it repeatedly. Did I eat or drink something wrong? Was it my bad genes? Maybe it was simply my bad attitude, maybe I didn’t pray enough.
Of course in my mind, if I am asking these questions, then surely other people will think the same thing. Surely everyone else must blame me too.
I am like every other human on this planet, I long to be loved and accepted. I want to be absolved of the blame and guilt, whatever that absolution looks like.
The answer each doctor has given to the question of blame is: there is no blame to put anywhere for this heart defect.
Are you sure? Because if I did something wrong, maybe I can go back in time and do something differently to fix it.
Nope, nothing. I am blameless.
I have been attending a Bible study on Ephesians and one of the concepts we focused on is this very issue of being blameless.
“For he chose us in him before the creation of the world to be holy and blameless in his sight.”
Did you catch that? He chose me to be blameless before the creation of the world. This is monumental. Not only did God determine I am blameless, he determined it before the creation of the world. That means that he knew me before the creation of the world. He knew all of the things I would and wouldn’t do and chose me to be blameless with full knowledge of those things. So even if I was responsible for my children’s disabilities; even if I had done something reckless to cause them, in Christ I am blameless. I am forgiven.
I wish I could pass this truth on to all of the other mammas (and daddies) of special needs kiddos. You are blameless. God is a big God. He has forgiven you. He doesn’t hold you responsible. Forgive yourself. Give yourself a little (or a lot) of grace. God has.
Maybe you don’t know why your child is disabled or maybe you do know the reason. Why do these bad things happen to us; happen to our children? There is no good reason except that evil exists in the world.
So as I cried out to the world “this isn’t my fault” trying to absolve my own irrational sense of guilt, God has been at work loving me and showing me that I am blameless. I’m not fully there yet, who knows if I will ever fully be there. I am thankful for all of the people in our lives who have demonstrated so much to love us. Thank you for not pointing the finger of blame. Thank you for hugging us, for praying with us, for standing by us even though none of us knows what to say or do right now. We might never be able to individually say it out loud to each one of you but thank you.
So perhaps I should stop waiting on my journey and start waiting for my miracle.
Today we should receive the initial amnio results which will tell us the direction we are headed on this journey. The waiting is killer.
It’s a beautiful day outside and I should take the kids outside to play but I just want to curl up into a little ball on the floor. I’ve already yelled and scolded them more this morning than they’ve ever deserved. It took everything within me to continue sitting on the bathroom floor, smiling and encouraging my two little guys who were both sitting on their potty chairs, when I heard my phone ringing downstairs where I had accidentally left it. I lost patience with my husband simply because he called and the sound of the phone caused my heart to skip. I almost threw up thinking maybe it was THE call from the doctor.
I’ve put all my angst into today’s waiting when in reality, regardless of what the amnio results say, I still have 4.5 months of waiting left. Then the waiting will start over again. The question is, will it be waiting for minutes and hours or waiting for weeks and years?
The phone call that I missed, it was a dear friend of mine who I hadn’t shared the news with yet. I called her back and in between deep breaths and tears managed to tell her what is going on. Her first response to me “God can grow his heart. God can heal this.”
Yes, He can. So perhaps I should stop waiting on my journey and start waiting for my miracle.
At 4:30pm the dreaded anticipated phone call came. Amniocentesis results are negative. This means Jonathan is eligible for open heart surgery to give him a chance at life.
I cried, and I honestly don’t know if it’s because I’m relieved or scared.
As I laid in bed that night I focused on the physical pain I was in. I’m sure that made it feel much worse than it actually was but that felt better than the emotional pain and mental anguish I was feeling
Regardless of my faith/hope/peace in God I was absolutely terrified to go in for the amniocentesis….ok, maybe terrified is an exaggeration but I was definitely a little anxious to say the least.
My sweet friend Erin drove me to the appointment. On the drive over we talked, joked, had normal conversation. As we parked I begged her not to leave because once she left I knew things were going to get a little too real. Somehow having her there felt like holding back the tide. Danny met us and they both accompanied me back for the procedure.
The ultrasound tech greeted us with a smile and was upbeat as she told us she was going to take a peek at the baby first before the doctor came in etc etc. I wondered if she knew our baby was missing half of his heart. I felt really bad for her. How was she going to react when she saw that shocker on the monitor? Wow, this could get really uncomfortable, really quick. Danny must have wondered the same thing because he interrupted her and asked if she knew why we were there. She instantly became somber and as she spoke I realized that she had intentionally been trying to keep the mood light, to tell us the plan without having to say what she was then forced to say.
“I need to make sure there still is a heartbeat (at all) before we prepare for the procedure.”
Strangely this admission put me at ease.
We began the ultrasound and as the first image popped up on the monitor Erin burst out “Oh look at his nose! Look how he cute is!”
My heart leapt within me because I suddenly remembered, “this is still a baby. This is still my baby.” It’s so easy to distance myself and allow all of the “medical stuff” to dehumanize him.
The doctor came in and discussed some of the medical pieces with us including risks. The risk of miscarriage related to the procedure is 1:500 which she explained was actually less than the risk of the results coming back abnormal (based on the presence of the heart defect). Through the ears of a mother whose baby who has been given a probable death sentence my brain processed this info and said, “the risk of your baby dying because he’s dying is much more likely than dying because of the amnio so what does it matter what the miscarriage risk is?”
I did ask the doctor if she suspected the amnio results would be bad news. She responded that she honestly didn’t know in this specific instance because of the NIPT having been negative. She explained that NIPT is so new that in instances like these it is very much unknown how accurate the results of the testing really are.
The doctor and ultrasound tech kept the atmosphere of the room light as they bantered back and forth with each other and us. I may not have been able to express it to them, but I did appreciate it. They were pleased that Jonathan was in a “perfect” position for them to perform the amnio. While there was definitely discomfort involved it was actually much less painful than I had anticipated. The doctor and tech remarked to themselves afterward how smoothly it had gone, one of the quickest and easiest they’d done. Thank you Jesus.
After the catheter was inserted through my stomach and into the amniotic sac, Jonathan reached out and grabbed it. Everyone laughed and called him a stinker.
“Can he see it?” I asked in astonishment.
“No, there’s no way he can see it but somehow he seems to know that it’s there.”
The lighthearted moment struck something heavier inside me. What if this is the closest to interacting and playing with my baby that I ever get? It even seemed sad to me to see the tubes of amniotic fluid. Just a moment ago the fluid was touching my baby and may have gotten to hold him for longer than I will.
The amount of pain I was in after the amnio surprised me, even though the doctor had warned me about it and given recommendations for managing it. I had contractions, my back hurt, my abdomen hurt, it hurt worse when I laid on one side.
This is what we refer to in hospice as “psychological pain.” We periodically see a patient who no matter how much their pain medication dosage and frequency are increased, report that it has absolutely no effect on reducing their pain level. In essence the person is struggling to confront the mental/emotional/spiritual pain they are going through related to the end of life and instead experience it as physical pain. I can admit, this is most likely what I was doing to myself.
I felt certain the results would come back positive for an additional complication. Danny was convinced they would not. During those days of waiting he began to prepare himself for the hard road of surgery and recovery. I prepared myself to say goodbye to Jonathan.
There’s just something really terrifying about the thought of having your pregnant belly stuck with a 10 inch needle down through your uterus and breaking into your baby’s amniotic sac.
I always swore I would never have an amniocentesis. There’s just something really terrifying about the thought of having your pregnant belly stuck with a 10 inch needle down through your uterus and breaking into your baby’s amniotic sac. However, when we met with our OB/GYN he did recommend we go forward with it as the fetal cardiologist had suggested we do.
(If any chromosomal abnormalities do exist, such as a trisomy, doctors will not be able to go forward with open heart surgery to save Jonathan’s life. Even though we had a NIPT with negative results it is not 100% accurate and a specific defect seen in the fetal echo indicated a possibility for a trisomy. An amniocentesis is the only way to completely rule out the possibility of a trisomy before birth. Without the amnio, a blood test would have be done after birth which means two days of waiting for results to determine if doctors can move forward with surgery.)
Danny was on board with the amniocentesis and was in fact the first person in the room to say it should be done. Inside of my head I was furious with him. I felt like he was betraying me. He wasn’t, even though he knew how much I did not want to do it. I was ok with the unknown. So what if we plan for surgery then once we get down to it we find out it’s not a possibility and we have to scrap it? So what? I can live with that.
My doctor explained it this way: these are two very different paths for the remainder of the pregnancy with two very different preparations for the end.
Danny needed to know which path we were headed down. He needed to prepare. Should he go forward with making plans to relocate closer to Children’s Hospital or did he need to prepare himself for letting go of his child?
The doctor agreed with him that we needed to know which path we were on. I was angry with everyone and everything. There was one thought that brought me some peace with what the results of the amnio might bring. I could feel tears burning my eyes when I asked the doctor “if there is a chromosomal defect do I get to stay here to deliver?”
The answer: yes.
I know this is horrible but part of me is relieved at the thought that the results will come back and show that there is nothing the doctors can do. Then I know that all I have is to pray for a miracle. I won’t have to plan to leave my home and give birth in an unfamiliar place. I won’t have to plan childcare or spend days and weeks in a hospital, trying to pump and trying to take care of multiple children, with multiple needs, in multiple places all at the same time.
At least then I know what the end looks like. It won’t be any easier emotionally but there won’t be the roller coaster of maybe today he lives but tomorrow will he die? Best case scenario, I deliver at my own hospital with my own doctor, then he’s born and it’s a miracle, he’s ok.
Our excitement over seeing the baby quickly turned to shock and sorrow. The specialist sat down on the bench next to me with tears in her eyes and broke the news that our precious baby’s heart had not fully formed.
(Snow Globe: because sometimes your life gets shaken and turned upside down.)
Danny and I decided that “Jonathan” would be the perfect name for baby boy #4. Actually, it was more or less the Lord who directed us to the name. Days after deciding on a name we attended our routine, mid-pregnancy anatomy scan. Typically this is when we find out if the new baby is a boy or girl but we already knew we were having a boy from our non-invasive prenatal test (NIPT). This screening helps to determine the baby’s risk for certain genetic/chromosomal issues as well as gender. Our screening had come back all clear.
The first thing we saw during the ultrasound was Jonathan’s little button nose that looked exactly like his brothers’ noses had looked in their ultrasounds. During the ultrasound D grew uncharacteristically quiet. I commented on it then assumed he was having a moment. What I didn’t know was that while I could only see the ultrasound tech’s hand moving the wand over my belly, he could see her face and what he saw in her face unsettled him. Our ultrasound concluded with a specialist coming to the room to speak with us. I thought this was odd but chalked it up to the fact that they had pre-warned me this u/s would be more in-depth due to the fact that I am 35 years old and technically considered “high-risk”
Our excitement over seeing the baby quickly turned to shock and sorrow. The specialist sat down on the bench next to me with tears in her eyes and broke the news that our precious baby’s heart had not fully formed. His heart only had three chambers instead of four. His left ventricle was missing. Then we were ushered next door for an urgent, unscheduled appointment with our OB/GYN.
My ob/gyn has been the perfect doctor for us because of his ever-present, calm and laid-back manner. It was reassuring to me for us to see him. His calm demeanor was present as always yet, the seriousness with which he addressed us in that moment, conveyed the devastating reality of our baby’s situation. Within twenty-four hours we saw the fetal cardiology specialists at the Children’s Hospital over an hour away from our home.
The drive to the appointment felt like it took an eternity. We spent what felt like another eternity in the waiting room. All of the staff greeted us warmly but we couldn’t muster much response back. I kept thinking how horrible it would be to work there. It’s not just a few families here and there you are dealing with who have difficult situations. Every single family who walks through the door has a baby with a serious cardiac issue.
A fetal echocardiogram was performed. Now that I knew what the medical staff were looking at, I could so clearly see the three chambered heart on the ultrasound monitor. I couldn’t bear to watch. I squeezed my eyes shut and had no control over the hot tears that silently slipped out. We waited, then we waited some more. A nurse finally led us to a room where we were left to sit at a table with a box of tissues. You never want to be the people who get shown to the conference room with the box of tissues.
The doctor and nurse who met with us for over two hours were truly amazing in their patience and compassion. Our baby was officially diagnosed with Hypoplastic Left Heart Syndrome (HLHS).We learned that without immediate and aggressive intervention upon birth, Jonathan can only survive hours, perhaps weeks. Aggressive intervention would include medication immediately after birth that will keep the heart functioning the same way it functions in utero (able to pump blood to the aorta without use of the left ventricle). The medication requires close monitoring in the NICU. After a couple of days of adjusting to life on the “outside,” the next step would be open heart surgery (eventually followed by two more surgeries).
Based on some things seen in the echo (diagnosis of Unbalanced AVSD Right Dominant a variant of HLHS) the doctor did have concerns that Jonathan may have a chromosome abnormality even though our NIPT had not indicated it. If any other such issues do exist then it removes the option for the life-saving surgery. Without surgery….
We left the appointment well past business hours, exhausted and overwhelmed. Even so, I didn’t feel hopeless because my ears had heard hope. I heard about the hope of surgery, hope for survival, and hope for quality of life. It wasn’t until later that I could in retrospect process the fears and concerns I didn’t realize I’d heard. It wasn’t until then that I heard the words of what had gone unspoken.
It was a surreal week that started oriented toward a goal with a name but ended it in feelings of loss and confusion.
Fb update 3/10/17
We typically keep our personal life relatively private from social media. However, at this time we realize we need the support and prayers of our friends and family. It has been a week since we received the life-altering news that baby boy #4, Jonathan has been diagnosed with an extremely rare and lethal heart defect. Upon birth he will need immediate and aggressive intervention to survive. This will require us to temporarily relocate (closer to Children’s Hospital) for several weeks before and after his arrival.
Each doctor we have met with has confirmed that this is not caused by something I did or didn’t do during the pregnancy. It isn’t caused by age or genetics. As one specialist put it “for lack of a better medical term it is simply ‘bad luck.'” Fortunately, we don’t believe in “luck.” We believe in God and we’re asking him for a miracle. He’s a big God and none of this is too big for him.
I am a christian so I’m not afraid of death. I am a hospice nurse so I’m not afraid of the dying process. I am a mother and my heart hurts.
We’re sorry you have to learn this here instead of from us directly. This is not easy news to relive over and over. Each time we share it we see the devastation you feel for us. It hurts and we also hate ruining your day. We know you don’t know what to say, and that’s okay. We simply ask you to pray. Pray for us, pray for our boys, pray for our precious Jonathan.