[zoltenfirman]

Hi, my name is Emily. I have three girls, my youngest has Cri Du Chat syndrome. She is 5 months old and we only got the diagnosis 2 months ago. She is doing very well in her health and at the moment is hitting her milestones, with the exception of speech, no vowel sounds as of yet. She has quite a bit of difficulty sleeping. She sleeps a total of 8 hours in a 24 hour period. She wakes about every hour at night, and takes 20 minutes to get back to sleep, so she is only sleeping 40 minutes in a row. I am exhausted and hitting rock bottom as far as my emotions go. She is truly a lovely little being, very sweet natured, always happy. My question is, how did you all go about explaining to the siblings that this baby that they were waiting for, who they have plans imagined for, is going to be different. I know that they love her, that is not a question. But, it feels like we are keeping a secret, and I don't want it to be that way. Should I just wait until she starts having delays and they start asking questions? I am so lost on this. Any answers would be so appreciated.

 

[bri276]

I think explaining everything might be a bit over their heads and upsetting- but definitely be honest when they ask questions and as they get older and can understand more, give them age-appropriate explanations in a positive but truthful way.
I did a little research on the syndrome- my daughter also has a rare chromosome disorder (tiny duplication of part of #3) and has some of the similar issues that I read, like slow growth and low muscle tone.

have the doctors given you any explanation for the lack of sleep? that sounds tough to deal with! not just for you but her also.

 

[zoltenfirman]

We haven't yet gotten any good ideas about the sleep, or lack thereof. BUT, my guesses are; sleep apnea- she snores pretty loud, the reflux- pretty mild, though, and SID. I am thinking about trying a sling or hammock for sleep and we are going to get involved in sleep studies ASAP. I was told by a sleep disorders specialist that they would probably recommend having her tonsils and adenoids out, but she is too young. If anyone else deals with the sleep stuff I am totally open to suggestion.
It is good to hear from someone else who has a child with a rare chromosomal anomaly. With an incidence of 1 in 50,000 you start to feel pretty alone.

 

[USAmma]

Hi! I don't have experience with CdC but I wanted to encourage you to get a sleep study done and try to get some help with her sleep. That is not healthy for her or for you, and the sleep deprivation as you probably know already, is horrible. You need to be able to get sleep to care for her and your other kids during the day. My dd had severe GERD and was (still is) on a feeding tube. We had a horrible time with her at night with vomiting and crying. I wish we had bene able to get respite care. Her sleep got better with the right meds, thank goodness.

 

[snuggly mama]

First, welcome!

Our youngest dd was also born with an extremely rare genetic disorder, and we have two older children who were about 6 and 4 when she was born. We struggled a lot with how to explain things to them, and a lot of the conversations evolved naturally around their questions. Dd had and continues to have many medical concerns, so it was pretty obvious that something was up with her early on. We also knew prenatally that she would have some potentially serious issues, so we talked to them about that on their level. I would just say be as honest as you possibly can, using the knowledge you have about your other children's capacity to understand and accept information. Our oldest dd needs lots of technical information and wants to know exactly what her sister's condition is all about. Ds, on the other hand, truly can't handle the hospital scene, so we've learned to respect his need to care for his sister in other ways.

It's been a challenging road in many ways, but I will say that I have been consistently amazed at my children's ability to see the positive, to show an real capacity for unconditional love, and to find creative ways to play with their sister.

 

[zoltenfirman]

Thanks everyone for your suggestion. My girls are 7 and almost 5 and so I know that they are going to need some explanations soon. They ask questions about when she will reach certain milestones and that sort of thing. Really, I just don't know what to say. I feel like a big liar. I haven't indicated that she is different at all to them. They did ask why the therapists were coming and I told them that the therapists were there to teach there sister things that she needs help with the same way that they have teachers. As far as the sleep thing is going... I am at a loss. We have been referred to the sleep clinic, I am sure that it will take a few months to get in, but I am not sure what anyuone will do from there. I can't imagine putting a 5 month olf baby on medication for sleep, and she seems tooo young for tonsils and adenoids to come out. I am looking into the respute care, but when would I have them come. At night? She is nursing at night so woul I have someone take her after she finishes nursing and have them wake me when she is hungry again? Should I have someone come during the day so that I can sleep in the afternoon? Perhaps I will start a new thread about this.

 

[paganmum]

I do not have experiance with the situation you are specifically dealing with but I have had to sit down and have 'the talk' with my oldest. It happend shortly after her dx and Ds wanted to know what was going on. Dh and I kept it basic since he was five at the time. I agree that they shouldn't be kept in the dark they will figure things out on their own if not given answers but it is only fair to them that they know the truth in what ever form is easiest for them to understand.

-Unity.