Mother Talkers

grieving for my brother

by thais

Tue Apr 15, 2008 at 10:09:39 AM PDT

My young (26) brother and his girlfriend were together for 7 months, and around Christmas found out that they were unexpectedly-- she was on the pill-- pregnant. They adjusted very well and were planning a life together with the baby, checking out housing, deciding to get married after the baby was due in August.

Today they found out via amnio that the baby has Down's Syndrome.

I don't know their plans, although I think they're trending heavily toward terminating. All I know is that either way this is a life-changing moment for the two of them. We will all support them regardless of their decision, but I am grieving very hard for our family. My brother in particular, always the black sheep, was looking forward to sinking his life into this baby and his new wife. Now I don't know if they'll even stay together.

My wish for them both is that they grow from this experience, whichever, and stay with each other and support one another. They're pretty functional. But their entire relationship has revolved around the baby. As a mother, I can't fathom the decision that lies in front of them. Either way.

I don't know how to support them properly (flowers seem weird, would like to run over to their house but would have to bring DD and they probably don't want to see her right now). All I can do is let them know I'm here for them regardless, I suppose.

Poor, poor 'kids'.

Tags: general (all tags)

Permalink | 49 comments

  • Letting them know that you care (0 / 0)

    is probably all you can do. Knowing that they have support from friends and family hopefully will help them make it through this. I can't even imagine what they are going through. As I am sure happens with most women when they are pregnant, I thought long about hard about what we would do if there was some problem. For me, there was no clear answer.

    Jen in NJ

    by littlepear on Tue Apr 15, 2008 at 10:36:18 AM PDT

    • I thought about it (0 / 0)

      and decided against all the tests.  The docs I've seen (not my midwife, but the "doctors") with my first were VERY pushy about termination for "abnormalities", and I didn't want that.  I knew I would keep my baby regardless, so what was the point in knowing early and grieving early?

      Of course, Julian's issue would only have been detected with a late ultrasound...but I know my first OB would have told me to terminate over it.  ::shudder::

      I've grown, I really have, with Jules' issue and surgery.  I know my parameters for adoption have changed (if you told me I'd be willing to adopt a kid with a physical birth defect or deformity, I'd have said no), and I make sure to tell people with "special" kids how lovely their children are, since I know how much that means to hear.

      Sort of off topic: saw a lady with a Downs toddler at the park, and remarked on how cute she was (all in pink, pig-tails, and SO in love with her mom).  Her mom looked shocked, then suspicious, and when she realized I meant it, broke into tears.  "No one ever says that," she told me.  "Thank you."

      What do you mean, uh-oh? baby pictures

      by round peg inna square hole on Wed Apr 16, 2008 at 08:33:43 PM PDT

      [ Parent ]

      • Sometimes its helpful (0 / 0)

        to know ahead of time so you can prepare. I say that in reply to

        so what was the point in knowing early and grieving early?

        Sam's obstruction was found on a late ultrasound and I'm very glad. It saved us a lot of confusion and panic if we had to wait for symptoms to appear. We knew from 26 weeks on that he would require surgery on day 1. Not fun, but we were much better able to cope knowing what was ahead. We met the surgeon, toured the NICU, made arrangements for DD, etc.

        by GiGi on Thu Apr 17, 2008 at 05:28:16 AM PDT

        [ Parent ]

        • I guess that's true (0 / 0)

          especially of things that surgery could hep correct.  But CF?  Huntingtons?  Downs? Didn't see the point of those.

          What do you mean, uh-oh? baby pictures

          by round peg inna square hole on Thu Apr 17, 2008 at 08:30:23 AM PDT

          [ Parent ]

          • Really? (0 / 0)

            Wow, I'd want to be prepared for any of those kids since getting early intervention and services lined up is critical...

            by GiGi on Thu Apr 17, 2008 at 09:10:31 AM PDT

            [ Parent ]

          • Huntingtons (0 / 0)

            Huntingtons is a very different situation.  If know you might have a HC child, then either you or your spouse is already preparing for your own inevitable horrifying death.  You'd know what to expect because you'd most likely have already gone through it with an afflicted parent.  There's nothing that can be done for HC, the  only decision is whether or not to terminate.  

            by lyn on Thu Apr 17, 2008 at 04:00:32 PM PDT

            [ Parent ]

            • asdf (0 / 0)

              "whether or not to terminate."

                 This land is your land, this land is my land
                 From California to the New York Island
                 From the Redwood Forest to the Gulf Stream waters
                 This land was made for you and me.

                 As I went walking that ribbon of highway
                 I saw above me that endless skyway
                 I saw below me that golden valley
                 This land was made for you and me.

                 I roamed and I rambled and I followed my footsteps
                 To the sparkling sands of her diamond deserts
                 While All around me a voice was sounding
                 Saying this land was made for you and me.

                 The sun came shining, and I was strolling
                 And the wheat fields waving and the dust clouds rolling
                 As the fog was lifting, A voice was chanting,
                 This land was made for you and me.

                 This land is your land, this land is my land
                 From California to the New York Island
                 From the Redwood Forest to the Gulf Stream waters
                 This land was made for you and me.

                 In the squares of the city, In the shadow of a steeple;
                 By the relief office, I'd seen my people.
                 As they stood there hungry, I stood there asking,
                 Is this land made for you and me?

                 There was a big high wall there that tried to stop me;
                 Sign was painted, it said private property;
                 But on the back side it didn't say nothing;
                 That side was made for you and me.

              by jennifree2bme on Thu Apr 17, 2008 at 10:34:27 PM PDT

              [ Parent ]

              • asdf (0 / 0)

                To be clear, I'm very pro choice, but the mention of Huntington's rang a bell because I just watched Arlo telling the draft lady that he might get it, and she said since he didn't have it yet, he was eligible for the draft.

                If Woody hadn't been around, what a loss for generations of Americans!

                by jennifree2bme on Thu Apr 17, 2008 at 10:39:59 PM PDT

                [ Parent ]

                • true (0 / 0)

                  How do you weigh 40 to 50 good, normal years against the inevitable gruesome end?  It must be a heartwrenching decision to make.  You know if you had the gene and were undergoing IVF you would do PGD and implant only the disease-free eggs, and everyone would tell you you were absolutely correct to do so.  Is it different to selectively abort embryos that carry the gene?  I would never judge either way, because I know an HD family has a different view of this than I possibly can.  

                  by lyn on Fri Apr 18, 2008 at 12:55:59 PM PDT

                  [ Parent ]

      • I wonder if docs push for termination (0 / 0)

        because of all the costs associated with certain conditions.  The taxpayers pick up a fair chunk of the costs of caring for severely compromised kiddos.  I wonder if docs are ever pressured for that reason.

        by mamacita on Fri Apr 18, 2008 at 10:11:30 AM PDT

        [ Parent ]

      • Grieving for my brother. (0 / 0)

        I hear people say this all the time, "I thought about it, and decided against the tests, because there are no circumstances where I would terminate." Often in response to hearing bad news some one else got from a genetic test, and after hearing that they are weighing whether to terminate the pregnancy.  Often, those people sound like they expect some sort of medal.  I think it's smug, and I get to think that, because I used to be one of those people.  I did not have tests, there were no circumstances where I would terminate, there was a little hint of judgment in my tone in understanding these other (no doubt weaker then me) people's need for certainty.  Then I had a child with Trisomy 13, no upper palate, no lower half to her face, fed through a tube for all of her short life, with the prospect of frequent excruciating pain with the feedings and hunger without them, then we fitted her with a belly tube, which caused the intestinal infection, which also caused excruciating pain, and that infection ended her life at 8 weeks old.  She had no frontal lobe, she would never know how to walk, or talk, or most likely even recognize us, but she certainly knew pain, thanks to me and what I now acknowledge was my fear that I would terminate, if I had knowledge via a definitive genetic test of a disorder.  Now, I would terminate.  The whole experience nearly killed me, and I can't do it again. I'm glad that your experience was so wonderful and boadening, but mine was painful and shattering. I feel immensely guilty for failing to prevent my child's needless suffering (Trisomy 13 babies have a 90% fatality rate in the first year of life, and an almost 100% rate in the first four).  I wanted to slap some of the "pro-life" relatives who came to my child's funeral and praised me for "allowing her to experience life."  As a matter of fact, it's been several years and I still do. But I stood there and smiled like a good little hypocrite.  I have had every test known to man for my 2 subsequent children, and hoped that I would have the courage to make a decision based on what was best for that child. I have also sat, at mommy and me and preschool meetings and wherever childbearing women gather, and listened to more women make these smug remarks about a decision that I know is as likely to be based on fear, and on what others will think, as on anything else.  And I wonder how many other women like myself are out there.  Testing is a tool, not a mandate for destruction.  By the way, my first OB downplayed testing to me, and made a point of telling me unsolicited that she refused all genetic testing for her 2 young children. I think her remarks unduly influenced my decision. Because I liked her, I did not want her to think badly of me.  It's a personality flaw, I'm working on.  So maybe what you were hearing was the Doctor trying to make you see the possible consequences of your decision, so that, when the time comes, G-d Forbid, you can live with it, if you have to.  I also go out of my way to be nice to kids with Downs, because they could easily have been my child, and because frankly they are usually really sweet kids. That doesn't mean that I think somebody who doesn't feel able to parent a Down's child shouldn't be able to terminate the pregnancy.  It just means I'm a marginally decent human being, (I hope).

        by Kimora on Thu May 01, 2008 at 08:22:19 AM PDT

        [ Parent ]

        • testing (0 / 0)

          I opted to have some testing done this pregnancy, and leave the option open for more testing if I needed to. I was also one of those "no reason to terminate" folks... and for most things I still am. However, I also think testing is good for a number of matters that doctors, if they are aware of the complications, can begin surgeries/treatments at birth that can help your child. Downs kids often have heart conditions that need immediate attention, that's just one example, or spina bifida kids needing spinal surgery. This way the entire mechanism is in place for those things and do not have to be called in. I also think it would be/could be easier to emotionally handle if one was somewhat prepared for the news before birth.

          Kimora, I am so saddened for the trauma and loss of your first child, and for the ways in which you continue to feel those effects. I am so glad you shared your story here too. It gives me some much needed perspective and I thank you for that. Blessings on you and your children!

          by Suzanne77 on Fri May 02, 2008 at 08:15:35 AM PDT

          [ Parent ]

  • My niece's baby is a Down's child (0 / 0)

    Her name is Gracie and she is 4.  My niece's marriage did not survive this.  My niece did not know she was having a Down's baby and she was born extremely prematurely in Montana.  This is her only child.  The child has the double whammy of Down's plus prematurity and it has caused endless problems.  The entire first year of her life was spent in the hospital.

    The doctors went to heroic efforts in the first weekd of life to save this child without giving the parents a choice.  They are actually bitter about this because several times it may have been better for nature to take its course.  If they had known what they were in for....!  You get the idea.

    My niece loves Gracie very much and in many ways, she brings joy.  But she has also had complicated medical issues---tracheal tube and feeling tubes which she still has.  When she gets the simplest cold, she must be on oxygen.

    It is a difficult difficult life and my niece is handling it all as best she can.  Somehow, they lucked out on how Gracie was categorized with state so the millions of dollars of medical bills are being covered.

    You need to be a loving and supportive sister, no matter what they choose to do.

    by janetle on Tue Apr 15, 2008 at 11:20:42 AM PDT

  • Hard for all of you (0 / 0)

    Certainly the burden is on your brother & his girlfriend, but you all are grieving your idea of a grandchild, cousin, niece/nephew.  It's so hard.  DH has a Down's cousin. She's in her 30s now, and has the mental capability of a 12-year-old, so she can read & write, and hold down a small job.  She's a delight, but there was a cost to her family. She was the second child, and her parents' marriage did not survive.  I know her mother has great worries about what will happen when she's gone.  Her son has promised to look after his sister no matter what, but that's a burden on his family as well.

    It's odd, but there are certain disabilities I've always thought I could handle in a child, and certain ones that I would not.  For instance, I have an aunt & uncle who are deaf, so I've always thought I could deal well with a deaf child.  But no matter how much you think about "what would I do," unless you're faced with it, there's no way to know. It's good you all seem like you'd support their decision no matter what.  And we support you!

    by cynmill on Tue Apr 15, 2008 at 12:21:12 PM PDT

    • certainly (0 / 0)

      it seems like a minor thing from here, but the whole family is grieving for their own relationship with the child. This family is a Clan.

      I have a friend who was kicked in the stomach while pregnant and her child sustained brain damage. At 15 months she has yet to sit up. They don't know where it's going, what her abilities will be, but she loves that kid with her whole heart and her life would be poorer without her.

      Life sure can deal you some strange hands-- i think it's easier when you don't have to make a decision, honestly.

      if you wobba cypress trees then I will wobba you

      by thais on Tue Apr 15, 2008 at 12:39:28 PM PDT

      [ Parent ]

  • I'm really sorry (0 / 0)

    for your brother & his girlfriend, and your whole family. Regardless of what they choose, they [and you] are grieving the loss of the child you all  envisioned.

    I'll be thinking of you all.

    by Lisa in Austin on Tue Apr 15, 2008 at 01:10:58 PM PDT

  • So sorry (0 / 0)

    what a heartbreak.  I don't think I understood the difficulty of Down's until recently...I thought "a kid with a slightly low IQ and a sweet nature?  No problem!"  But I see now how very ignorant that was.  My cousin used to work at a summer camp for adults with Down's, and said that they would have a great summer, but the emotional part was pick up time.  She would see  all these parents come and get their "kids," and they were elderly.  Their job would never be over.

    It sounds simple, but I think food is always a good idea.  Pies, casseroles...it save them the trouble of having to worry about it, and lets them know that you're thinking about them.  It sounds like your family will be a great support, which will need if they choose to terminate, and may need even more if they choose not to.

    by Erin on Tue Apr 15, 2008 at 02:19:42 PM PDT

  • i will hold your family in my thoughts n/t (0 / 0)

    by slackermom on Tue Apr 15, 2008 at 02:26:59 PM PDT

  • I am so so sorry (0 / 0)

    I don't have anything else to say.  (((((hugs))))

    by anarchist mom on Tue Apr 15, 2008 at 03:51:45 PM PDT

  • Life comes at us hard and fast (0 / 0)

    and technology has changed everything. Whatever decision your brother's partner makes is hers to make. I wish her courage and comfort whilst deciding. That said, many offers of support on this thread are troubling to me. No one is guaranteed an "ideal" child and even we get one, something can go "wrong" later in life that makes that child a "burden." Instead, I will think good thoughts for you and your family and trust that decisions are made with an open heart and mind.

    I think they would like to see you AND your DD right now - kids have a way of elevating the mood and I would highly doubt they begrudge you your child. I would take over some food and perhaps a movie and see how it goes from there.

    On a medical level, did they do the amnio because the AFP came back elevated? Nuchal transluceny number high?

    by GiGi on Tue Apr 15, 2008 at 04:04:28 PM PDT

    • AFP (0 / 0)

      AFP was elevated. There's no doubt there are troubling layers to this...I have to say, also, these kids have nothing. Minimum wage jobs, period. On medicare. I read somewhere that there are usually multiple heart surgeries involved, not to mention special schools, equipment, extra care... the mind boggles. Not that this resonates more than other considerations, but I think they're in a state of panic.

      if you wobba cypress trees then I will wobba you

      by thais on Wed Apr 16, 2008 at 07:39:49 AM PDT

      [ Parent ]

      • It really all depends (0 / 0)

        on the severity of the chromosomal abnormality. Have they done a nuchal translucency scan? It might be worth it (even though the amnio is the ultimate diagnostic the scan may help in the decision making process). I was very good friends with an OB who was stunned every time a woman chose NOT to terminate. It's as if the OB industry is invested in this "perfect product" that simply does not exist. My OB was shocked that I declined a whole mess of early tests and later amnio...she just couldn't wrap her brain around ruling out every 'defect' they could imagine. Ugh.

        As someone with a medically complex and fragile child I will tell you it's not easy. I wouldn't wish the emotional, financial, and physical stress on anyone, let alone a young couple with minimal resources.

        Not to be glib, but Medicare is GREAT for kids with medical issues. In fact, I wish I could get Sam onto Medicare as it would alleviate a lot of our financial stress!

        by GiGi on Wed Apr 16, 2008 at 07:53:22 AM PDT

        [ Parent ]

        • OBs (0 / 0)

          I think OBs are terrified of lawsuits of any sort, including wrongful birth suits.

          I had a prenatal test scare with one pregnancy (one elevated test, turned out to be absolutely nothing). When the OB  called me to tell me, she immediately launched into a talk all about termination in NJ, literally 45 seconds into the conversation.

          Then I declined a later test, and I had to sign some kind of a waiver.

          Then she moved to another state around my 20th week.  I was glad to see her go, hate to say it.

          by NJmom on Wed Apr 16, 2008 at 09:38:09 AM PDT

          [ Parent ]

      • echo (0 / 0)

        I'm not sure what week they could do a heart echo, but that could help see if there are major heart abnormalities too?  The NT measurement is useful too, but I'm not sure how far along they can do that for.

        by NJmom on Wed Apr 16, 2008 at 09:33:48 AM PDT

        [ Parent ]

  • Sending hugs to you and your family (0 / 0)

    This is a difficult time for everyone involved.  But, I echo Gigi's  point that none of us is guaranteed a "normal" child, life can throw alot of stuff at you.  An early amnio can be a blessing in that you have a heads-up, medical information about your child and time to prepare for his/her anticipated needs.  

    While I would support a person who chose termination - that's why I support choice overall - I would also be ready with information about Early Intervention, local supports, and REAL (not fear-induced) information about Down's Syndrome.  If they decide to continue with their plans for a life together, they will want to make sure their child has the best life possible (as they would if their child was born without a disability).

    by Sue in Queens on Tue Apr 15, 2008 at 06:06:28 PM PDT

  • Food and support (0 / 0)

    Like Erin mentioned, food is great.  So is being very clear that you're there to support them both with whatever choice is right for them.

    I'm very very strongly pro-choice so I fully support your brother and his girlfriend should they decide to terminate.  I induced a pregnancy at 22 weeks, due to premature rupture of the membranes so I can imagine what the termination process itself might be like.  If they go that route it would be especially nice to be given options that will help with their grieving.  It may be possible for them to see their baby, take pictures, et cetera.

    Should they not:

    My wonderful aunt was developmentally delayed and operated at about a 7 year olds level in many ways.  She was an absolute joy to our family and loved her life.  

    In the Children's hospital that our son is at (almost going home!) there are many young people who work at the hospital with Downs, as well as other conditions causing developmental delays.  They're an integral part of the hospital and have a great community where they work together.

    Finally, as the mom of a baby with an odd heart defect they're getting much much better at treating cardiac and respiratory issues.  Some of the challenges with Downs are easier to treat now than they were years ago.  Also, as I'm starting to learn, depending on where you are there are fantastic support services for early intervention.

    by Anu on Tue Apr 15, 2008 at 07:40:19 PM PDT

  • my younger brother has Downs (0 / 0)

    the only physical problems he has had have been with his eyes (he needed surgery to correct his cross eyes). He also needed tubes in his ears, but many children do.

    Which is to say that having Downs doesn't necessarily mean a lifetime of physical ailments and maladies.

    He is 16 years old, a video game and music fanatic, and the light of my family. My daughter has adored him since she was an infant. And my parents' marriage not only survived, but thrived since he came into our lives.

    I was given the option of amnio because of the family history, but my husband and I realized that if our baby had Downs, we wouldn't terminate. So we skipped it.

    But I'm glad I had the choice, and I hope your brother and his girlfriend can come to the decision that is best for them. I'm sure they will cherish your love and support.

    by Erika on Tue Apr 15, 2008 at 07:55:10 PM PDT

  • I too would encourage (0 / 0)

    education and even more testing.  I had dear friend who was pregnant about 5 months ahead of me.  She had an abnormal AFP test and after follow up it was determined that her DD had spina bifida.  Weekly sonograms throughout the pregnancy, she developed gestational diabetes (but only gained 11 lbs for the whole pregnancy).  The father left, my friends father passed away suddenly a few weeks before she was due.  She was  a mess.

    But when her baby was born, she was fine.  No sign of all of the genetic disorders they had tested and tested for throughout the pregnancy.  Apparently, they believe that they had her due date off by 3 weeks and therefore were looking for things that shouldn't have happened yet.

    I personally don't know how she held up through the whole thing, but she managed.

    Our hearts and prayers go out for your whole family.

    Anne W
    Gifts By Delivery

    by Anne W on Tue Apr 15, 2008 at 08:20:57 PM PDT

    • wow (0 / 0)

      the false positives are so frustrating! All that worry for nothing! In this case it's an amnio with a chromosome count so it's conclusive, but I can imagine the constant stress your friend went through.

      if you wobba cypress trees then I will wobba you

      by thais on Wed Apr 16, 2008 at 07:42:31 AM PDT

      [ Parent ]

  • I'd send a note (0 / 0)

    <del>handwritten</del> letting them know you care about them and love them and will support whatever they decide.  Just reaffirm for them.

    Poor "kids" indded (I'm 24, LOL).

    What do you mean, uh-oh? baby pictures

    by round peg inna square hole on Wed Apr 16, 2008 at 08:28:26 PM PDT

  • asdf (0 / 0)

    It's so hard watching loved ones go through trying times and be powerless to fix it. Your heart must be breaking. Your words of support would mean a lot to them, I'm sure.

    by jennifree2bme on Thu Apr 17, 2008 at 10:50:19 PM PDT

  • Food and a handwritten note (0 / 0)

    those are really lovely ideas.  My thought are with you and your family.

    by face121 on Sat Apr 19, 2008 at 11:13:00 AM PDT

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