Caroline’s Story

imageMy name is Tracy. I have a 4 yr old, Kate, and a 1 yr old, Caroline who has Spina Bifida.  I am so excited about this website and all of the great resources on here in efforts to find a balanced approach with SB management.

I have a similar story as many, many people – negative AFP, older mommy, second child, no family history, healthy life, normal pregnancy, taking folic acid for years (oddly not for my first baby -she was a surprise and no SB), odds of SB with prenatal testing was 1 in 7000 (guess someone has to be the “1”)! We learned of the diagnosis on May 2nd at 2:45 pm (does anyone ever forget Diagnosis Day?). That day and the following week were probably the hardest times of my life. We were given the option of termination, our first
perinatologist didn’t know anything at all about SB (very frustrating), we declined fetal surgery (no judgements at all either way, just was not right for us), did not end up having an amniocentesis (again, no judgements, we just didn’t want to take the risk of miscarriage). Deciding on birthing plan was very hard. We ultimately decided for a induced (to fit with neurosurgeons schedule), epidural free, vaginal birth and it went great – delivery was about 20 minutes after contractions started, sac stayed intact, Caroline was born screaming and kicking her legs all over the place.  Her back was closed at 24 hours old and we spent a total of 9 days in NICU.  She was monitored with MRIs over the next few weeks – her ventricles kept growing so she had her ETV/CPC at 7 weeks old.

Caroline is cathed 4-5 times per day and is currently on Ditropan.   Although entirely breastfed when starting Ditropan, she became constipated within 2 days and we had to start Miralax.  She continued Miralax for about 6 months until I was just so tired of giving chemicals to her and wanted to try something different.  She is now on fish oils, blackstrap molasses (this stuff if total magic), and probiotics to manage her bowels – no more Miralax and her bowels are better than they have ever been.  She also takes D-mannose, corn silk, and Cranactin for her bladder health.

We got involved with early intervention even before she was born and do PT with them twice monthly.  We are very proactive about PT at home, especially through a lot of fun play activities.   Most of the time she does not even know she is doing PT 🙂  She started rolling over at 4 months old, sitting up at 5 months, standing (assisted) at 6 months, scooting on her bottom at 10 months and crawling at 13 months.  She is already showing some signs of wanting to walk – will likely need AFOs.  She is also very smart, knows quite a bit of sign language, and can scribble and paint beautiful pictures 🙂  Lastly, and most importantly, she is by far the happiest person I know.

She and her big sister are the absolute joys of our lives and we wouldn’t change a thing. Ok, yes we would get rid of SB if we could, but this is part of her and we love all of her, even the SB!

What I want to pass onto new families – diagnosis day is the absolute worst, lowest part of SB. Pregnancy is tough. The NICU is hard.  Surgeries suck.  There will be medications at times, and hopefully more and more can be managed naturally and without side effects.  But it is all worth it, 100%. Our babies are amazing. Caroline has taught me so, so much already and I can’t imagine one moment of my life without her in it.

9 comments

  • Love your positive attitude! I tell people all the time that I know that God allowed SB into my life to grow me into a better person. It has been the most glorious thing, learning to lean on Him and also learning to look for the amazing miracles that happen each day. I love your story, look forward to getting to know you better through the forum here. I’m now off to research blackstrap molasses for bowels:)

  • I’m so sorry its taken me forever to get to where I could read and comment on all of these, but…

    I’m so glad to see Caroline here! I’ve really enjoyed following along with her over on Baby Center too. Several us seem to have little girls about the same age, pity there’s so much geography in the way!

    In any case, I’m glad to have you here with us. It’s the next best thing!

  • Just wanted to give an update on Caroline. She is doing great!! She had SB clinic in November and did really well. PT is very impressed with her mobility and thinks she will be walking with AFOs by 18-20 months old. She will be fitted for her first set in January and I am excited to find out if the new carbon fiber braces will be an option.

    Urology was not as great at we had been hoping. Caroline continues to have great looking kidneys and no reflux, but her bladder wall still looked thickened. We had to increase her dose of Ditropan. Unfortunately, I have never been thrilled with our urologist and will be seeking a second opinion in a couple of weeks.

    All in all, she is happy, healthy, smart and funny. Cats are still her favorite thing in the world as well as giving open mouth kisses anytime someone makes a kissing sound. She really loves to kiss the cat and we will be surprised if she does not cough up her first hairball very soon 🙂

    Here is an updated pic of my beautiful babies!

    • Hi Tracy.

      Along with our investigations regarding an alternative treatment (ETV /CPC) of Hydrocephalus we also stumbled into this forum. But maybe I start from the beginning just to introduce ourselves and tell you as short as possible about our story!

      Before I start, telling our story, I’d like to admit that I was deeply touched by your stories and really, really hope that all still works out for you and your little ones!! It is really true, SB is something very bad, but on the other end: something that belongs to someone you ..love!

      My name is Ben, my wife is called Miriam and our (now 7month old!) daughter’s name is Marlene. We live close to Augsburg (Germany:-).
      During our pregnancy on June-1, 2016, along with our 20weeks US, Marlene has been diagnosed with SB. (If I look backwards I can now definitely confirm your story: Although there a hundreds of challenging events along with SB, the diagnose day, incl the days after, has been the worst by far!!). Everything was turned upside down: fear, sorrows a lot of additional open questions on how to proceed, except one: We never asked the question if we should determine pregnancy. We in fact let us inform about the gender of our little one, as we wouldn’t have done without the diagnose. This was to immediately give her her supposed name ‚Marlene‘ at the time we arrived full of tears back in our car. By giving her her name she immediately became THE PERSON we were ready to fight for – no matter what..!

      I try to keep the following really short, since you are definitely familiar with all I list here:
      We passed all required examinations / inspections and went under fetal surgery exactly one month later – July-1, 2016. The surgery was done by Prof.Dr.Martin Meuli and his team in Zürich (Switzerland). The surgery itself was a huge success. Marlene was born in time in week 37 by c-section, again in Zürich on Sep-23, 2016. During the first check-ups in the NICU Marlene did just great: Neurologics good, bladder good, legs/feet/toes: motors good. The only thing which was subject for more intense monitoring, was her hydrocephalus that was, however mild, but processing. 2 Month ago the indication of local neurosurgeons was implementation of a shunt. This was confirmed by some other neurosurgeons that we visited. Since it wasn’t an emergency at this time, we started our search and found (surprise!): Dr. Benjamin Warf! We looked into all of his investigative work and went through his studies around ETV / CPC. We then did a remote Second Opinion at Boston Children’s Hospital (via GrandRounds). We were so happy that Dr. Benjamin Warf personally reviewed our case! He replied within a very comprehensive opinion that Marlene would be an „excellent candidate” for the treatment ETV / CPC. Currently we are in the last steps together with Boston Children’s Hospital: Setup treatment plan, travel preparations, … . So we have decided to go this way since all looks so promising, and – not at least – Dr. Warf seems very optimistic in regards of Marlene. We are very happy.

      Since I now found this forum and read your stories, I found that you also underwent the ETV/CPC. Would you mind providing us your experience around the ETV / CPC? I mean, we anyway will go for the procedure, since we are looking forward to this great opportunity, however it might be very interesting to hear how you went through it all. I just phrase some topics here:

      How have you get to Boston and to the ETV / CPC procedure?
      How long have you been at Boston (prior / post surgery) and how was your time at Boston Children’s?
      How did your little ones developed since then?
      Is there anything that you would state as very important to know?

      Thanks a lot for reading our story, and – of course – for your feedback & very important: ALL THE BEST FOR CAROLINE!!!

      Warmly,
      Ben

      • Hi Ben! My sincerest apologies for the extremely delayed response. First and foremost, congratulations on your beautiful baby! I am sure Marlene is the joy of your life!! I enjoyed reading about her story and so glad you found us here on SBN.

        First, it is awesome news that Marlene has made it all the way to 7 months without any hydrocephalus intervention. That is an enormous success! And, I am very happy you found Dr. Warf and will be pursuing the ETV/CPC. The success rate is good, especially for a baby that has not needed intervention for this long. Yay!

        Caroline had her ETV/CPC at 7 weeks old. The procedure was preformed in Portland, Oregon by a doctor that was trained by Dr. Warf. Caroline has not needed any further intervention. She has had many MRIs to follow her surgery, and all have looked good, so now we do the MRI every 1-2 years. The ETV/CPC is not successful for all babies and some kids do need revisions and/or a shunt placed afterwards, but apparently the success rate of a shunt goes up (less complications) if there was a previous ETV/CPC. At any rate, I am glad you are visiting Dr. Warf and exploring all of Marlene’s options.

        Unfortunately, I won’t be able to answer your questions about Boston since we were treated in Portland. However, I will forward your questions to another mother on this forum who’s baby was/is treated by Dr. Warf so she know all the ins and outs.

        Our experience with the ETV was smooth. We were admitted early in the morning, she had her procedure which lasted 2 hours (I think?), she recovered pretty uneventfully (a bit of crying, her eyes involuntarily wiggled – called nystagmus – for about an hour then resolved, no seizures, minimal pain meds, eating within an hour or two after surgery), we stayed only 1 night in the hospital, discharged the next day on minimal pain meds. The followup was a bit intense – weekly MRIs for a month, then every other week for a month, then once monthly for 6 months, now once every 1-2 years. This is not often the protocol, so don’t let that scare you. I know of many cases where people went home and just monitored signs and head size/circumference and reported back to Dr. Warf the results.

        I will message the other mom who knows more about Boston. I wish you and your family all the best and will look forward to an update about Marlene!!

        Take care,
        Tracy

      • Hello Ben,

        Tracy sent me a note and asked if I could help you some. We are patients of Dr. Warf and she thought I might have some useful insight.

        First, CONGRATULATIONS on your sweet girl!! And what a fun age she is now!!

        We traveled to Boston for our daughter’s birth, in order to have access to Dr. Warf from the beginning. Zelie’s ETV/CPC surgery was done at 17 days old. She was still in the hospital there from her birth/back closure surgery. Since then we have traveled back annually, but that has been our preference not a necessity. We have been there 5 trips in all.

        The hospital in Boston is VERY accessible by train (they call it the “T”) or cab, no matter where you stay. If you have not already made arrangements for where you will stay, I would contact their patient housing division immediately. http://www.childrenshospital.org/patient-resources/accommodations/patient-family-housing-program Boston can be quite expensive and sometimes, there just are no rooms, no matter how much you have to spend. Patient housing may have availability. They will allow one parent to stay in the room with Marlene at all times, but can only accommodate one person overnight and the room might be shared with another patient and their family. If you stay withing walking distance, walking is by far the best way to get there. Vehicle traffic can be more than a nuisance. All patient family housing accommodations are within just a few blocks.

        The hospital itself is quite large, over 400 beds. They have been undergoing some remodeling, that might yet be underway when you are there. My point being, it can be a little confusing to navigate at first. You can ask ANYONE for help. Everyone there is helpful. There is an area just across from the main entrance dedicated to patient families. They have many helpful resources and could most certainly help you find your way.

        We were still in patient when Zelie had her surgery, so I cannot speak to how to register on the day of surgery or what might be required prior to that date. I’m sure the hospital will tell you. I believe they require a preoperative clinic visit the day before. The surgery itself generally requires only one, or maybe two nights in the hospital. Given that Marlene has done so well until now, I would not be surprised if one night was all that was required. We have always found the staff there to be of the highest caliber. Dr. Warf himself is both honest and kind. He absolutely takes each child to heart.

        For us, because we also live quite a distance from Boston, follow up included a two week post op visit, sending him weekly head circumference measurements and another “final” surgical follow up visit at 6 months post surgery.

        As far as how long to stay… You’ll need a day to travel, a day to recover, a day for pre-op clinic, the surgery day and one or two days in the hospital after. That’s a week. I would find out in advance what sort of follow up he will want from you in the first few weeks following surgery. If he wants a 2 week follow up visit, I would plan to stay for 3 weeks if I could. It would just be simpler than two transatlantic trips in one month! And Boston has a great deal to see and do.

        Developmentally, Zelie has done very well. She has excelled with language mastery, and what few delays she has had have been related to the delay in gross motor skills, and hospital time, that have kept her from the experiences on which development is predicated. In some ways, it is a bit like being a preemie, though she was not premature. As she has gained those experiences, she has caught up where she was behind. She is a charm and a delight who has no problem expressing herself or navigating her world in an appropriate way.

        I hope that helps you. Please feel free to ask me anything. I’m delighted to help if I can.

        • Dear Tracy and MrsK.

          Now it’s up to me to apologize for a very very long delayed response to your very kind, sensitive(!) and supportive notes to my message. It feels so unbelievably good to get such feedback from someone who is going through the same story as oneself! Thank you very very much.

          The reason why I wasn’t coming back earlier is because we were busy with a lot of things around Marlene’s current condition and also with BCH regarding plans for the procedure (ETV/CPC). But now comes the good thing: We were finally able to get all remaining topics sorted out together with BCH International desk. The delivered input from your end helped us as well to prepare ourselves before hand in regards with what to expect during our stay at hospital)and how to situate accommodation wise. …. So here we go: We arrived in Boston yesterday. Meeting with Dr. Warf is scheduled for tomorrow morning following by all pre-op checks. The surgery is scheduled for Thursday, to be performed by Dr. Warf!!

          So all set – also because of your kind support! Thank You very much. As said I hope, all is still ok and evolving good at your child’s!? I send you all best wishes back from our end. I will certainly keep you posted about the result here in Boston!

          Warmly,
          Ben

          • Thinking of you and your family today and hoping that surgery is swift and uneventful! Keep us posted!
            (And, darn, I can’t see the photo you posted).

  • Sweet sisters!

    Thanks for the update. Keep us posted on urology. I’ll be interested to hear about the results from the second opinion appointment.

    I’d love to see her little AFOs, once she gets them, too!

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