Sharing the News
"It is only possible to live happily ever after on a day-to- day basis." --Margaret Bonnano
Today my little baby sister Gianna was born. She was a month early and sufferered from trisomonial disorders. I went to the hospital today and saw her...she was alive and breathing and struggling to hold on to that gift most precious to each and everyone of us - the gift of life. Her little chest moved up and down and her little face had the expression that she was fighting as hard as she could in a noble battle.
She died today. My little sister left this world to move on to a better one. An innocent, fragile lovable human being; her struggles are over and she rests now in happiness and peace with God in Heaven.
How often do we take our lives for granted? We get so wrapped up in our own disappointments and failures, but we fail to realize that we have the greatest thing going for us. We are alive and can make anything out of the life before us. Each breath we take is a gift - life is short and while we have it we should do something good with it. My little sister had but a few hours, but she lived it out to the fullest.
Patrick Nagurny, age 18, brother of Gianna, born with Trisomy 13
You may not yet have told others about your baby's difficulties. You may wonder who to tell and how to do it. Begin with those closest to you, your other children.
TELLING YOUR CHILDREN
The first child to tell is the one in your womb. Your unborn child may not understand your words but he will sense your emotions. Talking to your baby also helps you to work through your feelings.
We learned much about anencephaly, but we still feared for both of our unborn children. We experienced sadness, grief, helplessness, but also happiness and hope. I tried to be honest to myself and to my unborn daughters. I spoke to them and tried to prepare myself and my daughters for what was going to happen. I told Anna I was very happy with her and very sad she could not stay with us. I told my daughters to enjoy each-other's company as long as they were together, because they had to say goodbye after birth, or maybe before birth. I told Tess to be strong and brave and that it would be difficult for her, too. I tried to teach my unborn children the colors, sounds and music through my own senses, while Anna was still alive. I needed to do this, because I was certain Anna would never enter the world she was supposed to be born in. (Tineke, mom of twins Anna, who was born with anencephaly, and Tess)
It's important to tell your other children the news about their sibling before they hear it from others who can color it in ways you do not like. Explain your baby's problems as best you can. Explain how these will effect the family. You do not need to tell every detail to your other children, but all you tell them should be true.
We decided to help Nathan and Sarah get to know her and be ready for what would happen. We encouraged them to lean over mommy’s tummy and say, “Hello, Abigail!” and “Wake up, Abigail!” At first, it was a very forced, false cheerfulness that we had with the kids. It was so painful to talk to her ourselves and to have them do it. But, over time, it became natural, and we started thinking of her as baby Abigail who we loved, not as baby Abigail who has Trisomy 18. The kids started hugging her and telling her “goodbye” when I left for work, and soon it just made me joyful and happy to see their love and to think of her, not painful like before. We told Nathan that Abigail was sick and might not live, and so at first whenever we talked about Abigail, he would ask, “but what about ‘might not live’?” One day, he asked, “if she dies, will we have another baby in a few months?” He also asked how long will she live? And one time he said, “Maybe she’ll be well for one day.” Sometimes it made me cry to answer his innocent questions and to think that he had to be asking those questions at his age. But he handled it very well, knowing that Abigail would be going to heaven to be with Jesus and that someday “he’d be old enough to go be with Jesus, too.” (Mindy, mom of Abigail who was born with Trisomy 18)
Older children who know something about abortion may wonder why you are continuing the pregnancy. Appendix F contains a parable called "Melody Fruit" which can initiate discussion.
Oh God, what do we do? There is not just me and the baby to consider but our other kids, too. How can I ask them to watch me for the next 5 months getting bigger and knowing that this baby was going to die? That is not fair to them and how could they cope? Could they cope with either choice? How could I "terminate" this baby and tell them? They would never understand. If I lied to them and just told them the baby died, how can I lie to them? My head was spinning. We had to tell the kids. It was only fair. We told them that the baby was sick and was going to die. We didn't know when and there was nothing that anyone could do. We did not tell them what was wrong with the baby as I felt that they may not be able to handle that right now. Abby immediately became upset and started crying. Joe avoided everything by asking the little boys if they wanted to play. Jake and Pete didn't understand what was going on. I knew they would need a lot of support, whatever happened. I tried to find out as much as I could about anencephaly and to find other people that had been through this but was unable to because of my inexperience with the internet. The genetic counselor was not much help. I wanted pictures to get myself and family ready. I could only find one pencil drawing which was helpful to show the kids but didn't meet my needs. Jake looked at the picture and said that he knew why the baby was going to die, because it didn't have a brain and you had to have a brain to live. He also struggled with why we would want to name this baby because if you don't have a brain you wouldn't know anyway. I explained that everyone needed a brain and when our baby got to heaven he/she would get one from God and so really would need a name. This worked for him! I would hear Joe crying to himself at night. He was very worried about something happening to me and needed reassurance. His grades began to slip and he became angry. We got very concerned when he lost all competitive drive with his sports and didn't seem to care anymore. We took him to a counselor and we talked. That finally helped. Pete accepted what was going on and one day climbed up on me and speaking to my stomach said, "Hello, little baby that is going to grow up in heaven." How beautiful! Abby also talked about her feelings to her friends and teachers and to us and she grieved normally. (Sue, mom of Lucas Adam who was born with anencephaly)
Not all grandparents, aunts, uncles, and other relatives can initially accept a child with difficulties. Unsupportive relatives can create a great deal of stress. You, as parents, may have to assert your right to see things differently than your parents or other relatives do. You are mature enough to make your own decisions and this is your baby, not theirs.
After I told one relative about the baby's condition, I could not believe the response...Well, you are over 40!" As if Gianna's condition was a result of a risk I had taken! And then, "Iit would be best to have this baby out of your body as soon as possible." I am at risk for pre-term labor and normally am required to drastically limit my activities. I was shocked that this relative would suggest that I encourage labor. This was the only time I had with my child! But then I realized that this relative was concerned about me and did not want me to suffer. (Doreen, mom of Gianna who was born with Trisomy 13 and holoprosencephaly)
Educate your relatives and try to be patient with them as they come to accept this new family member. Be totally honest and truthful. That way you show that you have nothing to hide or be ashamed of, you will not have to admit to untruths later, and you will open yourself up to finding support. If you feel that someone cannot respond charitably and calmly to certain details, don't share them. If asked, change the subject or simply say, "To us, that is a private matter."
Some comments border on accusation. You may hear, How can you bring that poor child to birth? Children shouldn't be brought into this world to suffer. How can you justify the cost? What's this going to do to your family (marriage, other kids, spouse)? You can't even handle things now. How are you going to handle this? What are you doing to yourself? Have you talked to the right people about this? I know what we would do if we were in this situation. I've seen babies with this condition and they're not pretty.
Don't argue. Folks who make comment like this do not want dialog. Take control by responding, "Thank you for your concern." If you are a religious person, you might add, "We're letting God be in charge." Then change the subject. The unsupportive person will soon get the hint that you are not going to justify or debate your decision.
Dealing with people who don't know about your baby's condition is sometimes easier than dealing with those who do know. If you don't want to divulge details, briefly reply to strangers' comments.
"How are you feeling?" "Fine."
"When is the baby due?" Tell them your due date.
"Is it a boy or a girl?" If you know, tell them.
"I bet you're excited." "We sure are."
People want to make things better. They may say things like "God gives special kids to special families" or "an angel touched your child" or "God wants to bring blessings to you and so He gave you this child." Some folks say, "It could have been worse" or "Well, at least you never have to worry about him or her _______________(fill in the blank with something negative that your child probably will never be able to do)" or "These children are always __________ (fill in the blank with a positive adjective like happy, sinless, good)." These well meaning comments may hurt or irritate you. A simple response of "Thanks. I appreciate your caring," acknowledges the comment maker's good will.
Emily acted like she could not hear, even with loud noises and screaming right by her head. When she had a hearing test done after the placement of her shunt, it came back that she had normal hearing but a delay in processing it in her brain. In the last 3 months, her hearing reaction has improved drastically. I have been told by friends, they don't know how I can handle it all with calmness; they would be going crazy. I look at Emily as a blessing not a burden or hardship. You just have to take things one at a time. (Sabra, mom of Emily who was born with enlarged ventricles in her brain)
People may say the wrong thing.
I knew that when I could bring my baby home, everything would be alright! I remember feeling upset that everyone was saying they were "SORRY"! Here I had just had a beautiful baby and all everyone could do was feel sad for us! I wanted to hear "CONGRATULATIONS" and all I got were condolences. A baby is a miracle! (Susan, mom of Victoria Ann who was born with spina bifida)
Work to forgive those who hurt with their words.
Sometimes the nurses didn't know our diagnosis and would make cheery inappropriate comments. Others just wanted to get away from me as if I had a disease they could catch. Accepting and trusting God was not quite enough. There was a choice in accepting with grace or accepting in anger and feeling sorry for myself. I chose to carry in God's peace and grace. That meant accepting not only the joys of my baby but also accepting and forgiving the stupid (for the lack of a better term) comments of those who were well meaning, those that didn't know our diagnosis, and those who didn't agree with my carrying a child who would die. I actually had comments of "no brain, not human". I was congratulated by many strangers who didn't know how my heart wept at their words. Others seeing me with my 4 kids said, "Not another one! How are you going to manage another one?" Oh, please God, I wish! (Sue, mom of Lucas Adam who was born with anencephaly)
You may also be praised beyond measure.
I have been called a saint for carrying Luke. I have been told by many that they couldn't do what I did. I am not a saint, and you don't know what you can do until you are faced with it. While I carried Luke, God carried me. That is what made the difference. It was not my strength but God's and that strength is available to anyone who asks. The secret is in the asking. (Sue, mom of Lucas Adam who was born with anencephaly)
PEOPLE FIRST LANGUAGE
People First language refers to what a person has, not what a person is. Use this language in talking about your child. (This is the language used in talking about the children in this book). People First Language separates the person from the condition. A person is not a condition.
Here are some examples of People First language:
"My child has annencephaly" rather than "My child is annecephalic."
"My child has Down syndrome" rather than "My child is Downs."
"My child uses a wheel chair" rather than "My child is disabled."
"My child has a handicap" rather than "My child is handicapped."
A good way to begin seeing your child in a new light is by journaling all her achievements. Begin today and, in time, your child's mission will become apparent.
God has created me to do Him some definite service. He has committed some work to me, which He has not committed to another. I have my mission. I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good; I shall do His work. I shall be an angel of peace, a preacher of truth in my own place, while not intending it if I do but keep His commandments. Therefore, I will trust Him, whatever I am; I can never be thrown away. If I am in sickness, my sickness may serve Him, in perplexity, my perplexity may serve Him. If I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends. He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me. Still, He knows what He is about. (My Mission in Life, by John Henry Cardinal Newman)
You need a support system! Social workers, clergy, doctors, friends, psychologists, and psychiatrists can be helpful. Agencies provide information and assistance. Research these via the internet or consult some of the agencies listed in Appendix B of this booklet.
When things seem so hopeless, don't give up. There is help out there to assist you in keeping your baby. Lean on others for support. (Shellie, mom of Dylan who was born with hydrocephalus)
Through the internet, and sometimes through referral from others, you can find families who are awaiting birth or who have given birth to children whose condition is similar to that of your child. These families can be a tremendous support.
It's a miracle that God let Maria and I find each other, that our babies have the same condition and the same due date. She knows exactly what I am feeling and I know exactly what she is feeling. (Rosa, mom of Arianna who was born with anencephaly)
Brad and I found out at 16 weeks that our baby had spina bifida. We were devastated. The doctors and counselors gave us the worst case scenario and pretty much scared us to death. They told us we had two weeks to make a decision; do we terminate the pregnancy or go on knowing that our baby would be born handicapped. So the work began. We read everything we could get our hands on; we visited a neurosurgeon and pediatrician. We contacted the Indiana Spina Bifida Association for information. We visited a family who has a daughter with spina bifida. We prayed and cried and talked and prayed. Finally, just a couple days short of our 'deadline,' we had dinner with a high school friend of Brad's who is paralyzed and uses a wheelchair. His was an industrial accident, but we wanted to get his perspective. We asked him how he feels about his life now. He's a wheelchair marathon champion. He's happy and healthy and productive. Seeing life from his view, we chose to bring Karlee Rose into the world. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)
I went to the internet and found SOFT (Support for Families with Trisomy). I did manage to find some mothers who had live births. Most brought their kids home to bury them within a short time. They were women of all faiths and they were glad they had brought their kids home. They had a lot of technical support to do that. I even talked to one woman whose child lived to age thirteen. Everyone was negative other than those people whom I contacted through SOFT. I felt like I was on another planet. However, you do what you have to do. I tried not to let the negativity get me down. (Emily, mom of Andrew, who was born with Trisomy 13)
Search, too, for adults who have grown up with the same condition as your child. Their insights can be particularly helpful.
I have Down syndrome. I am very smart and very bright. A Down syndrome baby is very smart, they can walk, talk, and have many learning skills. As a Down syndrome adult I am able to learn many new things and develop many new skills. It seems as though people do not understand that. People must understand that the Down syndrome adult has much talent and they are able to learn and grow as anybody else can learn and grow. The Down syndrome person can learn so much in life. They have special teachers who help them. We are able to read newspapers, work on computers and like myself write poetry and stories. The Down syndrome person has much talent and uses that talent to learn and do many new things. (Bob, an adult who was born with Down syndrome)
Confide in your employer. You may find much support in the work environment.
I work with a wonderful group of people who were there for me every single day. I could be myself with them and they accepted me and my baby unconditionally. My bosses were supportive beyond words. I am forever grateful for these wonderful caring people and owe them my sanity and my everlasting gratitude. (Sue, mom of Lucas Adam who was born with anencephaly)
If you need financial services, ask doctors, state agencies, and social workers to guide you.
GETTING THE NEWS DOWN INTO WRITING
Send out an email or a form letter to family and friends to let them know your baby's condition. Try to anticipate and answer all their questions. Let them know your plans and how you wish them to respond to you. Some folks will respond positively. Others may feel that you need to be alone or else are not sure what to say and won't respond.
I had let the school and my kids' friend's parents know. The kids were going to need all the support they could get. I also am very active in the school and all the kids know me and would be struggling to understand. Everyone pitched in to help my kids. There were many group hugs. I had many kids come up to me with questions and comments. How wonderful kids are in their innocence! I remember one little girl who in a very serious voice said, "Mrs Jorgenson, I am very sorry about that dead baby inside your tummy." Then she skipped off before I could answer. How much better than some adults that just plain avoided me! (Sue, mom of Lucas Adam who was born with anencephaly)
Once you understand the baby’s condition better, you may want to send a letter or email with ways that your family and friends can help you prepare for the baby’s birth. Often, people don’t know what to do in a situation like this, and they appreciate knowing how they can help. You can ask people to help you by:
· Finding other informational resources on the baby’s condition for you
· Watching your other children (if any) so you can make phone calls or go to appointments
· Making phone calls for you, or going to medical appointments with you
· Helping out financially or organizing a fundraiser for you if you will be traveling or need to cover certain costs
· House/pet sitting if you are going to travel
· Cleaning your house
· Making prepared dinners for you prior to, or after the baby’s arrival
· Organizing a blood drive - either for the general pool, or for a directed blood donation for your baby (ask your physician about directed blood donations.)
· Adding you and the baby to prayer lists
· Throwing a baby shower for you, if you would like. Some parents decide that they prefer to wait until the baby is home and then have a baby shower/welcome home party. Others want to proceed as normal and have a baby shower while pregnant. Make sure that you make your wishes known to family and friends, whatever you decide.
· Beginning a “Random Act of Kindness” campaign in the baby’s name. Asking people to do a nice thing for someone else while waiting for the baby can help create special meaning and purpose to the baby’s life before he or she even arrives. Ask family and friends to send you a note of their Act of Kindness, so you can keep a record of the positive impact your baby has had on the world.
By clearly communicating your needs and expectations to family members and friends, you can eliminate misunderstandings, and receive the support and help you need during this very difficult time. (Debbie Hilton Kamm, Mother of Braedon who was born with Hypoplastic Left Heart Syndrome. Debbie is creator of the HLHS Information website  and co-founder of California Heart Connection , a nonprofit support network for those with heart defects. Revised April 26, 2005)