I wrote in a few weeks ago because I found out I was having twins and that one twin had a black spot in belly. Well I saw a perinatal doc last week and she diagnosed the baby with hydrops and said that the baby probably won't live much longer. The other issue we have is that they are identical twins. So if the hydrops is caused from a chromosome issue then the other baby may become ill or have down syndrome or some other issue. The last few days I have been flooded with many different emotions. Mainly I am scared of any of the possible out comes and just keep trying to keep my faith in the lord and that he knows what we need and what we can handle. I guess what I am looking for is words of wisdom advice from anyone who has lost a baby , any who has a special needs child or anyone who has gone through something similar. TIA
I can't offer any advice. I just want to offer my support. I will keep you and your family in my thoughts and prayers.
First of all, my heart goes out to you! I have lost a child (miscarriage at 12 weeks), and it is heartbreaking. But it sounds like your doctor didn't give you a lot of information about what to expect. Did your doctor mention "Twin-twin transfusion syndrome in monochorionic pregnancy (hydrops affects the recipient twin)?" I admit I hadn't heard of hydrops, so I googled it. The wikipedia page listed this as a possible cause of hydrops. Basically, the (identical) twins share some blood vessels in the placenta, and one twin essentially gives blood to the other (causing cardiac stress & edema). The wikipedia page (http://en.wikipedia.org/wiki/Twin-twin_transfusion_syndrome) listed a couple of treatment options, too, one of which has a 90% chance one twin will survive & a 70% chance both will. I'm not a doctor and cannot say this is what's going on with your pregnancy, but it seems possible, and certainly worth asking your docs more questions. Don't give up hope! But do ask a lot of questions and even do your own research. The more informed you are, the more empowered you will be about your and your babies' care.
The unaffected twin will survive. It's a developmental problem that your baby has which could have developed from anemia. There are ways to deal with it medically before birth so that the baby will survive.
Start making phone calls there are experts in the field that know more.
In identical twin one may not have it and then you will get a child from this pregnancy.
You need a better informed more up to date well trained specialist than the one you saw. You live in the Houston area you can find one.
Hi N..
I'm so sorry for the fear and uncertainty you are facing right now. I am praying for you and your babies. God knows the answers before we even know the questions.
Lean on us when you need to. We are all here to support you.
Hugs,
Christi
Hi N.,
I just want you to know that I am praying for you and your precious babies. I really hope that you and your babies are ok. Just remember that God will never leave your side. I know you are religious b/c of your post-- and that is wonderful~ You will get through this with God and a supportive family and friends on your side. I know the diagnosis you got wasn't what you wanted, but try to remain positive for your babies. You never know how it will be until you are there and they can evaluate your little ones. Be strong for them and for you. Talk to your husband or anyone who will really listen to your fears and support you. If you need to vent or talk to someone, feel free to pm me. I know what you are going through-my child didn't have the same diagnosis as your babies, but I went through a horrendous pregnancy/delivery etc. I am here if you want to talk. Hang in there!
Hugs,
M
My heart goes out to you dear one. I lost a baby years ago and I still remember the pain. I pray for you and your baby. Right now you are on overload with information. I am so glad you have your faith to help. I hope you also have family and friends to be there for you. YOU need lots of love and understanding. This stuff has a way of working out good or not so good but remember to take care of yourself. I will pray and pray for you.
Don't let the negative thoughts stay in your mind. Keep some positive thoughts handy to replace them anytime negative thoughts creep in. Satan will want you to question your faith. But as you said, the Lord will not give you more than you can handle. You will be a great witness to all of those around you as you keep your faith strong. I am already inspired by your faith!
Here is a neat essay that someone added their own personal pictures to:
http://www.youtube.com/watch?v=Tehcysu03EI
Here is the written form:
http://www.our-kids.org/Archives/Holland.html
May God continue to bless you throughout this experience.
I haven't experienced what you are going through, but I am sending prayers your way! I do know a woman I met through my twins club, and she lost a twin at 19 weeks (delivered the baby who didn't survive). Through modern medicine, the doctors were able to keep the second baby in until 28 weeks and she now has a healthy six month old. Not exactly what you're dealing with, but don't lose hope! Hugs to you.
