The major question we had, and a big reason for getting the fetal echo done at CHOC, was to meet a cardiologist there and see what she knew about CHOC and their history of repairing babies hearts who also have Trisomy 18. From personal accounts that I have found via blogs and the parents of Trisomy kids Facebook page that we belong to, I’ve read quite a lot about parents having a hard time finding surgeons willing to provide surgery for their babies, solely based on the T18 diagnosis. I would want to believe that the medical professionals would only deny a surgery based on a medical reason, but it’s heartbreaking to read that around the country, parents are having the same experiences... like some of the healthier T18 babies, who were born without anyone suspecting they had T18, are discovered to have heart defect issues after they’re born, so they were originally scheduled for surgery, because the team of cardiologists deemed them healthy enough to survive the surgery based on their assessment of the child... but then the test results come back positive for Trisomy 18, and the parents are left wondering why the care plan for their baby all of a sudden doesn’t include the surgery that earlier in the day was absolutely necessary, but after official diagnosis not even an option? Here I go elaborating on my thoughts on the matter again. I’ll try to just stick to the big ideas and things we’re asking for help in praying for.
- CHOC cardiologist that we met with said that in her 12 years at CHOC, no family with a T18 baby to her knowledge has ever been offered a heart repair surgery. I asked her specifically if parents have requested heart repair surgeries and been denied? And she nodded her head... citing the same “reasons” that appear in the articles I’ll tag in this blog for anyone that is interested in further reading.
- The cardiologist did not appear hopeful that the culture of CHOC would change for Annelise, but did get us in contact with the coordinator for a heart surgeon in Omaha, Nebraska that I was familiar with already, because I had seen a YouTube video he made about common heart defects for T18, and he has repaired the heart of a baby girl whose mama I was introduced to by the fabulous family of the sweet 3-year-old boy with T18 that we met some weeks ago.
- We’ve also had our info sent to Stanford, Lucille Packard Children’s Hospital, because the fine folks there have been cranking out papers addressing the issue of intervention vs. not providing intervention and noting the positive outcomes for babies who do have heart surgery even though they have an extra 18th or 13th chromosome. I remember visiting my first nephew who spent some days in the NICU at Stanford, so we’ve actually somewhat had a tour already! Nephew is awesome and thriving now, as a side note :). I also trusted the grown-up heart surgeons at Stanford Hospital years ago to fix up my Dad’s heart. I already love that place... it’s just 6 1/2 hours away from our house and life in SoCal that’s the problem!
- I was ready to walk away from CHOC altogether, but then on Friday we met the neurosurgeon who we really liked and said he’d be on board no problem to close Annelise’s Spina Bifida lesion if she can handle anesthesia.
- We could use some help praying for wisdom and discernment. We’ll get some more opinions about the culture and climate of the heart surgery options for babies with T18 from other people at the hospital first, because I don’t know the cardiologist we met with personally... I can tell she’s brilliant about the heart... but I don’t know if she’s qualified to be the spokesperson for CHOC cardiology altogether.
The CHOC visit was supposed to last about an hour, but 2 1/2 hours later we rushed to the car in order to make it to our next appointment at Miller Children’s Hospital in Long Beach! So thankful for a husband that knows I get hungry who packed snacks for us that became our lunch! I’d say that the “feeling” of the room at Miller Children’s was day and the CHOC experience was night... it was so different to sit in a room with the perinatal connections coordinator, Annie, a NICU physician, a spiritual services coordinator, and one observer who is finishing up her residency and wanted the experience. We were informed that our decisions as parents of Annelise are respected, and their goal is for us to not even know what they would personally do in a situation, because this experience is about us and our decisions for Annelise. Their job is to get to know our wishes for her, provide expected outcomes for issues so that we are informed, and then connect us to the surgeons and specialists that will work with us and help support our goals for Annelise’s treatment. It was such a breath of fresh air! There are still unanswered questions that prevent us from ending our search for a hospital with Miller’s though. They are a level 3 NICU, which doesn’t provide all of the support for heart surgeries that a level 4 NICU like CHOC can (if they would agree to, anyway). I’ve also heard through other people’s personal experiences with the one heart surgeon that they have there that he might turn down a surgery for Annelise because of her T18 diagnosis too. So again, while I hope that she doesn’t need emergency heart surgery right away, I don’t want to deliver in a location where I know she’s going to be blocked from receiving it if she does need it. I won’t have the answers until we talk to more people though.
We spent a good while discussing our desires as parents in the event of a stillbirth, what to do if her heart stops beating, and a long mess of heavy situations. We dragged ourselves over to our next appointment for a growth check at our OB’s office, and decided that an early Thai food dinner afterward would be good food for our souls after the day we had. It was nice to see Annelise moving again for the 2nd ultrasound that day. Also comforting to see her moving and recognize that I can’t feel it because of that dang anterior placenta in the way, but now I’ll have that knowledge in my head to hopefully slow down the worst case scenario thoughts that race into my head when I realize I haven’t felt her shifting around for a long time. We got to see my favorite ultrasound tech again who tried her hardest to get a good 3D image again... but Annelise was relaxing with her arm covering her face and she wouldn’t move it! Oh well.
Ways that you can be praying with us!
- Annelise is measuring 3 weeks behind in growth. She has grown since last check! But her little head could still use some catching up! Praying for her brain to grow as typically as possible and forget about that extra chromosome.
- The neurosurgeon mentioned that if I don’t have elevated levels of alpha fetal protein in my blood, that could mean her Spina Bifida is actually covered by skin, so that her cerebrospinal fluid isn’t leaking out. The blood test results that I have from my labs all say “normal” for protein.... so I have a call in to my ob’s office for someone to call me back and tell me what protein that is... because not having her spinal chord exposed would be an amazing answer to prayer when we ask God to “please fix her Spina Bifida so it’s not an issue we have to deal with right away”. It’s a good reminder to me, even if she is born with an exposed spine, that yes, that is something that God could totally do, which is why I ask it of Him. He wants to know my heart and my desires, and He’s in this with us as much more than a spectator. Hard to think about the Lord loving Annelise more than we do, but He does!
- I’m still praying for her to be shockingly healthy, but I know struggle is part of this world, so if she is born but has health struggles, please pray for Kevin and me as we look for God’s wisdom above ours with medical decisions for this sweet kid. I know my internal brain battles will be “did we do the right thing? Should we have....” especially if we lose her. I have already started praying now that I’ll be prepared to shake off that doubt quickly, Kevin too. I’m not expecting to escape those thoughts entirely, but I’d like to not get stuck by them for long in the future.
While it’s so uncomfortable to sit in this time of unknown and feeling helpless and just broken-hearted that someone with the skills to save my baby’s life would look at her prognosis with mental deficits and medical challenges, with a shortened life span, and say “not worth it”. To my face! I can feel my skin growing thicker, a feeling I felt the first year of being a social worker too. Not a comfortable feeling (part of the reason I was only a social worker for 365 days), but necessary when I’m going to have to step out of my harmony loving personality and as gently as I can, walk into conflict and challenge a powerful stranger’s assumptions about the value of the chance of time with my daughter as she is. I am so grateful for the 8 years of working with kids and their families on the autism spectrum. I have had the experience over and over of getting to know and forming a connection with a kid who has so much to offer the world in a different way, who brings irreplaceable value to their family and the people who spend enough time to get to know how to connect with them. My life is so much better because of “my” kids, the ones that are in my heart even when I don’t get to see them daily at work anymore. I'm also better because of the parents I have met in the middle or beginning of their journey with a child who has needs that aren't typical of the general population. Some of the best people! If Annelise lives but never utters a word to me, there will be no doubt in my mind that she will still be a human with a God given need for connection to another human, and I will do whatever it takes to find where that connection is for her and meet her there, celebrating whatever little successes we can enjoy in the life that I hope for her to have with us.
I can get bogged down in the details of it all, but a good exercise for me is to go back to my original realization when we first heard about Trisomy 18 being a possibility. God made her on purpose, and He knows what's going to happen. This is the same God who I praise for all the things I love about life. He's no different and is still worthy of that praise when things in this world are hurting my heart.
Stanford Study
Stanford Article
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