Second Surgery for Zillah’s Ear

Update:

Zillah had her first surgery on January 10th, 2024. She is recovering well and has been so happy with her new ear. She has more confidence and we are so proud of her. It’s a long healing process but we are on our way.

Because of the way her little ear was positioned the surgeon was unable to get her new ear lobe in the correct position. This will require a revision for Zillah, it’s scheduled for March 7, 2025. And, Good willing, she will also get her magnet for her hearing aid place so she will no longer have to wear a headband. (This all depends on logistics and Canada being willing to send it to the states so that we don’t have to pay out of pocket for it/ it’s covered in Canada but we are trying to avoid an additional surgery).

Zillah is now allowed to play and swim as normal, of course we are very cautious still. Full healing of the ear is one year. But by 6 months usually the ear has the definition and color to look ‘normal’.

Thank you to everyone for your support, kind words, prayers, donations, and all you do for us. It’s a big journey but we feel so blessed.

A Big THANK YOU (Feb 2024)

Words honestly don’t seem like enough. But right now that is all we have. We are so grateful, thank you. Thank you from the bottom of our hearts. We will probably never know every single person who contributed but our hope is that you know every prayer, kind word, dollar, and every bit of your time and energy helped, mattered and touched us. Leading up to this surgery we were pretty quiet about things, and then everything changed with the SFU scan that led to an article at the university, to the Nelson Star then to the ‘As it happens’ interview on CBC , fundraiser at Junction Church, on line auction and then to our amazing community of people at St. Jospeh’s in Nelson helping out. When we decided to enroll Zillah into St. Joseph's school this year we had no idea the magnitude of blessing we would receive from this community. Both Barak and I had heard such great things about the school but never did we foresee this level of involvement and help. The prayers, the posters around the school, the fundraiser are just a few of the amazing ways we have been blown away. Everyone is so accommodating and helpful with the healing process for Zillah as well, the return to school has been made as smooth as possible.

Now a little bit about the surgery and California. Surgery was long but things went well. Recovery was relatively quick as kids are so resilient and Zillah is such a little trooper. She was so brave and we are so proud of her. Her ear will take 6 months to have its fully healed color and definition, but in truth they say at the year mark is when things are truly fully healed and the skin is 'tough' then. Zillah has her second surgery scheduled for March 7th, 2025. During this surgery she will have a minor lobe revision, right ear pierced (they couldn't do it first surgery as she needs a revision so they wanted to make sure the lobe was in the correct place before piercing it). and they will (hopefully) place her magnet under her skin so she doesn't need to wear a band for her hearing aid. The second surgery is much less invasive, only approx 2-3 hours and therefore 1/3 the price .

I decided to take this time to answer some common questions. The surgery did not fix her hearing. The surgery to make an ear canal is too risky. The surgeon actually no longer will accept patients if they are doing the ear canal surgery as well. She states it causes too many complications and in most cases the children who do this will lose their hearing in approx. 10 years anyway. The risk did not outweigh the benefit for us. So this ear that was created you could say is for aesthetics only, however it gives a little girl a chance to wear sunglasses, goggles, mask, and earrings. It gives her a chance to live her life without others always looking and pointing and asking questions. This surgery was a long time coming, we have been planning for years now, and even though it is not what everyone chooses to do, it's what we believed to be best for her and her future. We are truly grateful that we have, mostly, been only met with kindness and support. This journey is not an easy one, but we have really been blessed and God has helped us every step of the way. It is through people like yourselves that he works, and has his goodness ever been shown to us, over and over again.

Another question is about the ear itself. They print a 3D print of her other ear, and make it slightly bigger (as your ear is around 90% grown by Zillah's age). They use a 1 piece implant manufactured by Su-Por from a single piece of porous polyethylene. It is then covered completely by nearby tissue from under the scalp called a temporoparietal fascia flap. This is a thin vascular flap that has arteries, veins and nerves. This flap then grows into the implant and gives sensation to the skin grafts that cover the ear. It is considered fully healed after one year. We have decided to wait till March of 2025 for the second surgery to allow Zillah time to fully heal and grow. She is a petite girl and we want to ensure that her skull thickness is ideal for the magnet placing for her hearing aid.

Currently Zillah is covering her ear, by gauze and a little cover, as directed by the surgeon. Her treatment plan changes weekly as we are in touch with the surgeon on a weekly basis with pictures and getting new directions on how to move forward. But I believe that will all come off in a few weeks and you will all be able to see her new ear. Of course, now you all know that its still healing and won't have its full shape, definition and color for at least another 5 months.

I wanted to give you that information as sometimes it’s hard for me to repeat this over and over throughout the day. However, I want you to know that you are more than welcome to stop me, call me or message me anytime you want to know something. I know you have all invested a little bit of your heart and we are so grateful for all of you. I will attach a few photos of our time in California. We definitely enjoyed being together every day and being in the sunshine. California is really gorgeous, as some of the locals told us, you pay so much so that you can live in the beautiful sunshine. But the sunshine made our souls very happy, we are also grateful we missed the cold snap here! A side note... Zillah's ear can never have ice on it, as it could hurt that beautiful flap we talked about earlier . Just a little side note for you all.

Again this email doesn't feel like enough. I wish I could stop you all and hug you and thank you. But that would take a long time and probably would cause a lot of tears. Truly we are doing well, but I am aware of how big this is and it can sometimes all feel a little overwhelming. So if you can keep us in your prayers, for healing, peace and God's hand over us we would greatly appreciate it.

Love from The Shulman’s ❤️

Recently Zillah told me she wants a big ear like mommy, as you can imagine that hurt my heart a lot. But also made me realize this surgery is the right step for her. So we are going ahead with the ear reconstruction next year with Dr.Lewin (here is her website if you want to take a look at the amazing work she does: https://lewinear.com/ 

Zillah was born on August 21, 2018. As many of you know she was born via schedule c-section as she was diagnosed with an omphalocele at 14 weeks pregnant. Zillah was born with half her liver sticking out of her body. She had surgery at 4 hours old. She fought hard and was released from NICU at ten days old. What many of you don’t know she was also born with a hole in her heart and an underdeveloped right ear. Zillah will be getting ear reconstructive surgery at age 4 (next August!). The surgery has to be done in the states as the doctors in Canada do not do (or feel confident doing) the type of reconstructive surgery we want for our little girl. She will be getting surgery with Dr.Lewin in California. Dr.Lewin uses a 3D scan of the big ear to make the new ear. The process requires us to stay in the states for 4 weeks due to post op check up. The surgery and the time spent there will cost us around $100,000 (depends on exchange rate etc). We were hoping to do some fundraising but with covid that’s all been put aside and we are now fully dependent on donations. We appreciate your love and support and thank you in advance for any help you can provide. 

Thank you to all for everything. We are truly grateful for all our family and friends who have been so amazing and supportive. We have really been blessed with an amazing group of people. 

Love 

Milenia , Barak, Zillah and Odessa