Operation Cold Feet

[mayashekhina]

Hi

well my name is Racheal and 10 months ago I had twins Beth and Ethan, Beth has a rare chromosome deletion that is only known by its number because it is so rare 2q37.1 terminal deletion de nova, Ethan has classic Kleinfelters or 47XXY.

Beth has had 2 major heart surgeries and has quite a complicated heart condition she has a hypoplastic right heart (underdeveloped) and has some sinister sinosoids coming out of the right side feeding straight into her aorta which for us laymen mucks around with her blood pressures so that if she has an op and loses blood pressure she immediately goes into cardiac arrest (which happened twice with her first heart op).

Any way she also has a fused lamboid suture on the right side and in May we are to see the neuro surgeon and Plastic Surgeon about whether or not we will go through with the surgery to correct the suture.

why I am writing is to find out if anybody here has ever decided for one reason or another not to go through with the surgery and how this has affected their child. I am still unconvinced about surgery as we have worked so hard to get Beth to where she is now and really dont want to risk losing her if we dont have to.

To me Beth is beautiful I actually cant see any deformity unless I hold her in front of a mirror and the I see how her face is being pushed over to the one side and she does have a prominent bump on the back of her head on the left side. She doesnt however have any pressure on the brain that we can tell at the moment and does have some problems with head control.

Has any one else found themselves in any sort of similar situation...Help!

[Jennifer]

Both your babies look beautiful! I can't help with actually being in your situation- I can't imagine the stress you are going through!!! What do Racheal's heart doctors say about her going through this surgery? Have you met w/ the NS and PS before? I can see why you would be having hesitations on the surgery- I would usually assure at how well these babies do and how strong they are (which they are- Racheal is your proof!), but can completely understand the fear w/ her having had the heart troubles and then additional scares during surgery. :hugg
I hope somebody that opted not to have the surgery will post to give you some more input.

All that being said, I'm glad you've found us and do hope that we can be of help and support!

[mayashekhina]

Thanks Jennifer,

Im racheal BTW my babe is Beth. The heart op was done at one hospital and the head op is to be done at another, for this to go ahead there has to be some communication between both teams and then I want assurance that they at least understand and know what they need to do. I have met with the PS before but this will be the first time with the Neuro surgeon and I really want to meet with the anaesthetist as they will be the one controlling blood pressures etc.

[MikenAustinsMommy]

I also can't imagine what you are going through right now, I read your story on your webpage and was amazed at what strong people you and your husband are. Some power above must have seen what a caring and supportive Mom you already are and decided that these two special beings would be in great hands with you.
I would think that if you do go through with the surgery for Beth that the surgical team would be well prepared for anything that could happen as far as the blood pressure. If they didn't seem comfortable with it, I would find new doctors until I found a team that did. Remember, you don't have to go with the first set of surgeons you meet with.
My son had Right Coronal which affected the shape of his face, and placement of his eyes, so it was really noticeable. We decided without hesitation to go through with the surgery.

[Addy]

Hi Racheal;
I just wanted to welcome you here and say I will be praying for you and your babies. We also have twins(boy/girl) and our little guy's name is Ethan as well! It sounds like you've been faced with a tough journey and it also sounds like you are a very strong woman, but just know we are here for you whenever you need support. I'm sorry I can' offer info advice, but I will also be asking the neurosurgeon that same question(if it's necessary and what if we don't do surgery) if our daughter has this condition(she needs a ct scan still). Best of luck and I think your two are so beautiful! (((Hugs)))

[Anna Webb]

Hi Racheal, It sounds as though you have been on a very difficult journey. Your babies are beautiful. We too were faced with a difficult decision of whether or not to have my daughters surgery done. Lily was diagnosed late at 19 months and had surgery 2 months ago for sagittal cranio. The cranial surgeon was really the person who made the decision clear for us. It was hard to get any useful information from most other health professionals because they just didnt have the medical knowledge. Our surgeon basically said that sooner or later there would be problems for Lily without the surgery. I too struggled because Lily was just as beautiful before her surgery and i didnt want the surgery for cosmetic reasons. Her surgery went well, although longer because of her late diagnosis. Within 2 weeks she was back to her happy self and the pain medication (only for a short period of time) seemed to do the trick. All the best and let us know how you get on.
anna

[Matthews Mommy]

Well, I would like to say welcome and god bless your beautiful family. I send many prayers to you. I have just decided in September to not do a second surgery for Matthew that required a bone graph. I had many reasons for my decision and Matthew has a lot of developmental disabilities as well as physical. I do have the risk of direct impact to his head with an open space can be dangerous, but we are very cautious and I truly trust god. I know this is not the same type of situation as yours but I want you to know your not alone we all understand you many hugs and prayers.

[mayashekhina]

Guess what! I have found another mum whose daughter had fused plates (front plates) and a similar heart condition (left hypoplastic-a bit more complicated) and a chromosome deletion I am grilling her as I speak!

[craniomommynbaby]

It is great that you found someone that can relate exactly to your situation! Your family is definitely in our thoughts and prayers.

I can relate to some of your children's names. My son is Simon; my nephew is Ethan; my brother is Daniel.

[mayashekhina]

Cindy

I just checked out your site I love how you set up the journal from Simons perspective it is really entertaining to read, you have a gorgeous little man there what a trooper!!

Im still waiting for the lady to get back to me the international time zones can be such a pain especially when waiting.