25 Weeks - Update #3 - September 12, 2024

IT'S A BOY! 

Wow. A lot has happened since our last update on Alyosha’s life and journey. So many answers to prayer but also so much worrying and anxiety about the future. As of today, little Alyosha is 25 weeks, 4 days! He is a healthy little boy, kicking and swimming around in his mama’s tummy! We are enjoying how he makes himself known each day, pushing his little bum and head up so we can feel him and know he is ok. 

To dive into what we know so far, it is a lot to unpack, but effectively, we are quite certain we will be given whatever degree and measure of care we want for Alyosha when he’s born. The limits to this will depend on the ethics codes for Dr.s in Canada, but we are prepared to push the line when we sense that there is care Alyosha should receive that will benefit him and help him thrive. If this sounds odd or concerning, it is because it might not make sense why we would be advocating for care that violates ethics codes. Simply put, medical systems have ‘norms’ established for the treatment of trisomy babies, and part of those norms are outdated beliefs about the longevity of a trisomy baby, and what is considered within reason for the efforts that should be made to save their lives and help them thrive. We struggle to know when we can trust our Dr.’s because of these ethics codes, and it has been a very trying time for us when it comes to trying to plan and make decisions for Alyosha’s birth and life. Thankfully we have been poured down with blessings in that there are other voices helping us understand what we need to advocate for in a system that is not geared toward appreciating and sustaining the lives of babies with trisomy. 

With that little introduction out of the way, I want to bring you back to August 14th, when we had the last correspondence with the maternal fetal Dr. in Regina who had previously broken the news to us of his suspicion about Alyosha having trisomy 18. Since our appointment with him in July, we had received a blood test back that confirmed a likelihood of trisomy. (We are holding this result with a grain of salt, because it is not categorized as a ‘diagnostic test’ as an amniocentesis is, and does not count chromosomes. The false positivity of this test is very high for young mothers, so the result does not have alot to bear on our outlook at this point. I will explain this in greater detail later). After the Dr. received the test results and we had the ultrasound from our last update, we received a call from him, and were told not to come back for a follow up appointment to check on Alyosha again. At this point, we had been given the very positive indications from our ultrasound tech about how things were looking good and some of our concerns were minimized regarding Alyosha’s spina bifida and the sucking he was doing with his thumbs. In our call with the Dr., I requested to discuss the different anomalies of our son’s brain which we had read on the most recent ultrasound report. He told me I must not understand, and reminded me that because Alyosha is trisomy, none of his conditions would be treated and there was therefore no reason to discuss them. Needless to say, it was a very cold response to parents just trying to make it from day to day, praying our baby will make it to term. 
We had previously received a referral from this Dr. for another maternal fetal specialist in Saskatoon, and at this point in the conversation, Chris interrupted, stating that we would like to conclude our care in Regina and proceed in Saskatoon. The office was unsure of why we requested this, but to us it was perfectly clear that this Dr. was not in support of our goals for Alyosha when he would be born. 

The next appointment we attended was to a Christian OB who we had heard very positive things about, from a classmate of mine (Lily), on the day I completed my last exams on August 24th. I had a thought pop into my head to ask this lady if she had an OB she liked, since she lived in Regina and I thought there would be no harm in asking. Immediately, she said her OB is her favorite Dr., that he prayed for her before the birth of each of her children, and highly recommended him. I was so encouraged by her story, I called and was able to see him the following week. Chris had taken some time off to work on the house, so he was able to join me at the appointment. We got there and sat anxiously waiting, expecting to be told that there would be no reason for us to see a general OB because of the trisomy diagnosis. At one point, in tears, I looked at Chris, and asked, will we fail our son? Will no one help us? Then the Dr. entered the room, reaching his hands out to shake ours. He began entering our information into his system and made no remark of there being a problem with me seeing him despite Alyosha’s probable diagnosis. We learned quite quickly of his love for Jesus, as Chris told him that he was a carpenter, and the Dr. responded, “Ah, the same as the father of my Lord and Saviour!”. At this our hearts were lightened. He affirmed that we had made the right choice in leaving our previous Dr’s care, and encouraged us that we should have no trouble in receiving the care for Alyosha we see fit in Saskatoon. This Dr. will continue to work with the Dr.s in saskatoon and provide follow-up’s for Alyosha in Regina.

In between meeting this Dr. and leaving the previous one, we were surrounded with so many trisomy families through facebook. We were brought in contact with a Catholic organization called Be Not Afraid, which provides resources and support to families advocating for the proper medical care they need for their children. Be Not Afraid is tied to Dr.’s with a great knowledge of what it looks like to care for and bring Trisomy babies safely into this world. We signed up with them toward the end of August, and have been assigned a case worker, who calls us on a weekly basis to follow up and keep track of our progress. In addition, she has also facilitated a call with a neonatologist in South Carolina. Altogether, these wonderful people have been helping us learn how to speak up for Alyosha and take control of the conversations we have with Drs. 

Our main goals for Alyosha are that he be treated as any other baby would be, were they in need of support at birth. This includes what is called stabilization and evaluation. This simply means that the baby is given any supports needed and stabilized within the first 72 hours of life, and then assessed according to standard protocol to ensure any medical concerns are promptly addressed, according to the parents’ wishes. The beauty of this approach is that it allows Chris and I the opportunity to decide what path to take looking at our actual baby, not making decisions based on predictions and what-ifs. Although some of those decisions still have to be made ahead of time, our goal is to give Alyosha every chance and let him show himself, before we decide what is best. 

I mentioned earlier that the blood test that indicated trisomy does not have alot to bear on our decisions going forward. This is because whether or not the source of Alyosha’s conditions is a trisomy disorder, it cannot be treated. Fundamentally, chromosomal disorders cannot be resolved on a genetic level. Instead, what we can do is treat the conditions that present as a result of the trisomy. For Alyosha, that is the spina bifida, omphalocele and hole in his heart. Babies who do not have a trisomy diagnosis are born with these conditions and receive proper care that is often withheld from trisomy babies, so when we say we want him to be treated like ‘any other baby’, this is what we mean. Wrapping up this point, we aren’t especially concerned with whether or not Alyosha truly has trisomy 18 at this point. The Dr.s are assuming he does, and our current goal is to ensure that despite that, he will receive proper care. Down the road, we will have an opportunity to confirm the trisomy disorder after his birth, but we are not interested in investigating it further until he has been given proper care, as confirmation may lead health care providers to withhold this care. 

Following our appointment with the OB in Regina, we met with the new maternal fetal Dr, at the Women’s Health Center in Saskatoon. Once again, we were nervous. We didn’t know if our goals would be invalidated, but as the Dr entered the room, and we realized our fears would not come true. She approached the conversation with a very humble attitude, and gave us every opportunity to speak our minds about what we would like to ensure Alyosha receives for care. Some of our questions would be better suited to the palliative Dr. we would see the following week, but it was still a huge improvement from the maternal fetal Dr. in Regina. At the end of our appointment, she even allowed us to have an ultrasound, and pointed out all of Alyosha’s medical concerns, explaining them to us in terms we could understand. 

Since then, we spoke with our palliative Dr, who once again surprised us with how open she was to respecting our goals for Alyosha. Our conversation opened up the various scenarios at birth and required us to make decisions that we have not come to a conclusion on. She was very kind, and is open to us taking time with these things. I explained to her and her colleagues on the call that although we speak of all the treatments we want for Alyosha if he is born vibrant and strong, we daily face the possibility that we could have a very short time with him. We have been encouraged by Be Not Afraid to express these fears, as a common blind spot for parents in our position is a state of denial, assuming only the best and avoiding the hardest realities. Neither Chris or I have any lack of understanding when it comes to the bleakest possibilities. While we won’t disclose our choices for Alyosha to this degree, we would like to indicate that these are the things running through our minds at any moment. 

Making choices for our son feels like the most liberating thing and simultaneously the most terrifying thing. Liberating because we get to give him every chance. Terrifying because ultimately we are the ones who must decide when to withdraw care. In this time, we keep going back to knowing that God gives and takes away. We chose to offer Alyosha up to God’s care when we chose to keep his little life, and we will continue to offer up his life to God in each decision we make. Although we are here to care for him for as long as we have, we know that ultimately, God is the one who guides the hands of the Dr.s who treat him and handle his body. We can take no credit for his survival, and we cannot carry the burden of his loss. We realize that we could go crazy, trying to micromanage every aspect of Alyosha’s entrance into this world, but we know that wouldn’t be love the way God intended it. For all of eternity, Alyosha’s soul will be in the hands of God our Father, and that is what is most important.

Please keep us in your prayers as we continue to advocate for Alyosha’s life. Pray for the Dr.s who we speak to, that we are connected to those who see a way when it seems like there is no way. Thank you for supporting us and walking with us in this time.