Site Map

Home

Hydranencephaly
Information 

For new families

Prenatal Diagnosis

Our Rays of Sunshine

Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Health Conditions

For Grieving Families

Difficult Times Pt. 1: Taking Care of You

Difficult Times: Pt 2: What If?

About us

 

Meet other families:




 

Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base

 

 

 

When Hydranencephaly is Diagnosed Prenatally

Welcome: You've just been told that the baby you or someone you know is carrying has Hydranencephaly. You've likely been told that there is no hope for your baby and that it would be better for your child to die before birth. 

Yes, Hydranencephaly is a very severe condition and life for a child with this condition is not easy. But, survival past birth and through childhood and even occasionally into the teen years and beyond is possible. 

Options you may face
On this page I'd like to address a couple of issues you may be faced with after this diagnosis and give some suggestions as to where to find support and information on the choices you are faced with.

Termination of Pregnancy: Doctors will often push for a parent to terminate a pregnancy with a child with Hydranencephaly on the basis that the child won't survive birth. This isn't always or even often true. At this time we, as a group of families, have heard from over 300 families all around the world who have children with Hydranencephaly. Some did die before or shortly after birth but the majority lived months and even years. My daughter who had Hydranencephaly lived 11 1/2 years. You may also be told that if your child survives he will be a "vegetable" and not be aware if his/her surroundings, never feel emotion, never recognize anyone and will be in constant pain or constantly ill. None of these things are true in all or even many cases. As a rule, a child with Hydranencephaly who lives in a loving caring environment will be very alert and aware, know without a doubt all who are familiar, and even learn how to use simple switches, play with toys and recognize music. 

We realize that some of you have found these pages after having endured a termination procedure. Learning that you could have had your baby may cause you pain. We are sorry that you had to undergo such an experience. Acknowledge the pressure that you were under at the time of your decision. Had you known then what you know now, you may have decided differently. It is important to grieve the loss of your child and to recognize the role that others played in your termination decision. There is an African saying that "it takes a village to raise a child." It also "takes a village to terminate a pregnancy." Others around you, including professionals whom you trusted, were most likely advising termination. You, being "only a parent" and in distress at the news about your child, were looking for someone to trust with decisions that you felt powerless to make on your own. While you ultimately agreed to terminate the pregnancy, even if that agreement were coerced, those others who propelled you toward "your" decision are also culpable for it. You will not heal, however, if you blame them or harbor bitterness toward them. Forgive them and yourself and move on. Honor the memory of your child by creating a legacy of some sort to him or her. Perhaps you can help other parents in difficulty or leave something tangible to posterity in the name of your child. If you think about what to do, an answer will come. May you find the healing you deserve.

Please visit: www.mychildmygift.com The author of the site has written a book about families experiencing a serious prenatal diagnosis. There are also many testimonials from families and information on various conditions on the website. 

Cephalocentesis: If your baby's head is found to be very large (known as Hydrocephalus, common in Hydranencephaly) your doctor may recommend a procedure called Cephalocentesis where a needle is placed in the baby's head and fluid is withdrawn. This procedure is frequently fatal for a child. I am including some links to information on this procedure. It is justified in order to prevent a mother from needing a caesarian for a baby who is thought to be unlikely to survive past birth any ways. As stated earlier, this isn't true. 

Here is a website with information on Cephalocentesis:
Ultrasound Guided Cephalocentesis: A Study of 2 Cases   http://tinyurl.com/e4hsd 

If you decide that you can't care for your child yourself: 
Contrary to what many people think, there are a lot of people willing to adopt a child with a severe disability such as Hydranencephaly. We have a number of families who have adopted multiple children with this condition as well as many others. 
Adopt America specializes in finding homes for children with disabilities:
 http://www.adoptamericanetwork.org/    

What will life be like for a child with Hydranencephaly?
If you want to know more about Hydranencephaly and what life might be like for your child please visit the pages for New Families on this website. There you will find links to many pamphlets, documents and pages that can answer some of your questions about what life might be like for your child. 

Please join the Hydranencephaly mailing list by clicking on the button at the bottom of this page. We have had many families join the list before their child is born. 

I would also invite you to purchase the book on cd called: Caring For Your Child With Hydranencephaly. For more information

And, please feel free to email me at any time.

Know that you aren't alone, and that what ever decisions you make for your child are the right ones for you and your family. 

Experiences of families with prenatal diagnosis

From Lynne, mom to Nikki age, 7: Nikki was diagnosed at 7 months gestation with Holoprosencephaly and her birth mother was followed closely until she was 38 weeks. Her labor was induced and 10 hours later, Nikki was born, vaginally. Nikki had good apgars and was pink, breathing on her own and had good reflexes, she was sent to the regular nursery and was later transferred to NICU as she had no suck. At 24 hours old, Nikki had a MRI of her brain and the diagnosis was changed to Hydranencephaly. At about 30 hours old, just as many "typical" babies do, Nikki started sucking and was sent home at 3 days....with little to no hope....

From Diane, mom to Josh who died recently at the age of 6: Josh was diagnosed before birth, his birth mother was offered an injection into his heart which she refused. He was born 3 weeks early & left for an hour as they thought he wouldn't live, when they realized he was a fighter he was then taken to special care baby unit. He stayed there for 8 days then went to emergency foster carers. He then came to us at 18 days old & gave us 6 of the most wonderful years we could ever have wished for.

Sue, mom to Mason, age 3: Mason was dx before birth. No one knew just what he had but they knew it was very serious. The doctors wanted his birth mom to go to a nearby state where late term abortions were legal. Mason, like Logan was matched with a family who backed out when they learned there were problems with the baby. We came into the picture 2 weeks before he was born. We flew his birth mom to Utah where she delivered Masey. We were afraid if she delivered where she was he would be stuck in a NICU where we could not be there. Just before he was born the doctors gave us the "talk". They wanted us to answer questions like, "what do you want us to do if he doesn't breath?" One of the doctors met me in the hall and said that at case conference, that they thought I wasn't realistic and that I thought he was going to be "normal". HELLO......... She new me from Sky!?!?!? Anyway, he was born and had NO complications at all, except a little
jaundice. He came home at 3 days old!

Sue, mom to Grace, age 1: Gracies birth mom did not seek any prenatal care. She hid the pregnancy by wearing really tight fitting clothes. It was not until she went into labor that an ultrasound was done and it was discovered that Gracie had Hydranencephaly. The birth mom left the hospital shortly after birth and said I do what you want with the kid. I fostered her at 3 weeks old and adopted her 7 months later.

Debbie, grandmother to Jayden who died recently at the age of 1: Jayden was diagnosed at 6 or 6 & 1/2 months. Tabitha had not been going for prenatal care until just before 6 months and when the doctor did an ultrasound he found there was a problem. He then sent her for a high-tech ultrasound and amnio and thatís when we found out. They told us it was very severe and he would not live at all after birth. They told us to make funeral arrangements right away. We were devastated. Other then that they did normal prenatal care and did a c-section at 37 weeks. Well as you all know Jayden is now 11 months old and the apple of grandma's eye. So any family who have been diagnosed prenatal and are getting these same grime things from your doctors I want to say there is hope and this group has helped us tremendously.

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca