Even though there are many babies who have proven doctors wrong, and survived Hydrops Fetalis despite the odds they were given. There is still sadly a high number of babies who don't survive.
Here is some support and advice for parents who's baby has received an expected terminal diagnosis. By continuing your pregnancy you are giving your baby their longest possible life and letting them have the best chance at survival. Every moment they are with in you they are safe, warm, held, and feel your love. Here are some things parents have done to help them celebrate and find joy in their pregnancy, as well as bond with baby and make as many memories and keepsakes from their time with baby.
Things you can do
- Take Lots of pictures (family photos, photos at special places, maternity photos, weekly photos of growing belly)
- Get 3D ultrasound photos and video
- Ask for ultrasound photos and video of feet, hands, of their heart rate sound waves, their facial profile
- Record babies heart beat (and SAVE this in more than one place incase it gets erased.) use in a "heart beat bear, to imprint on jewelry, or use the sound waves for canvas prints
- Do a "belly casting"
- Eat special food such as family recipes so baby can be a part of that
- Journal! This is a big one. Use a pregnancy journal or regular diary to keep track of their kicks, turns things they seem to enjoy, and things they don't. Keep track of belly measurements and similar stuff.
- Read to baby or let them listen to music
- Most important talk to them and tell them you love them everyday.
All That Love Can Do and ATLCD Facebook Group
Sufficient Grace Ministries
String Of Pearls
Little Love Foundation
Audrey's Story (inspirational) Also check out her book I will carry you
Parents Share their message
Choosing to love a child you could lose love in spite of diagnosis "I learned that when we choose to love these children with fragile bodies, it’s always worth it"
To the momma whose child was just diagnosed
To the moms whove been told you baby may never take a breath
Some questions you might have
How should I tell people my baby is sick?
Do it in a way that you and your family are comfortable with. Some choose to tell many people at once through social media, others choose not to tell anyone, or only close friends. Its hard to go through this worry alone. It is helpful to find support groups and have people in your life you can turn to.
My doctor said my baby is expected to miscarry, be stillborn, or only live shortly after birth. They suggested I have an abortion/termination. What should I do?
Every baby is worth the chance. That they all deserve to live, even if may only be within the womb. Look at it in a different way. They are saying "we think your baby is going to die, so we can take away any chance baby may possible have and just end their life now."
That just doesn't make any sense does it? If they really think that with the severity of your baby's Hydrops and other issues are fatal then why take away that life instead of filling it with love, and trying any medical opportunity to save your babies life. There are many babies who survived after doctors said that there was no way they would live and pushed parents towards a abortion/Termination (to deliver when baby was way to under developed to survive.) Choose doctor who respects you and your babies right to life. Your babies life deserves respect, when they are sick their doctor should be working to help them get better, not giving up on them. You Can seek a second opinion, that is your right.
What if my doctor keeps telling me to have an abortion/termination?
Clearly tell your doctor that is not what you are going to do. If you feel any pressure or feel that your current doctor does not value your baby's life, go to a new doctor. You and your baby deserve respect and you each should be valued.
Should I have buy baby items if my baby is not expected to live?
If you are drawn to little items during your pregnancy you should buy them. Little toys, blankets, and outfits should be taken to the hospital when you deliver.
Is my baby suffering?
There is so much evidence that shows babies in utero even when they have such high fluid levels are NOT in pain. Through 3D ultrasounds we can see that they move and act like any other baby would, their heart rate doesn't reflect signs of pain or distress (although it may be low when fluid levels are high)... Unborn babies are in such a different environment, and are not physically feeling pain from the fluid as they are weightless in the womb.
Is it possible for my baby's prognosis to change?
Many babies start out not looking too good, But countless times these babies have pulled through some even have spontaneous resolution of fluid. It is rare but anything is possible and you are giving them the best chance by asking for treatments, having ultrasounds, and continuing to carry your pregnancy despite diagnosis.