Looking for someone with a similar experience

This is very difficult for me. On March 26th I went into labor very unexpectedly at 28 weeks pregnant. Up until that point we thought we were having a normal, healthy baby. Our daughter, Kara, was born with multiple congenital anomalies and died after an hour and a half. She was out second daughter. We already have a completely healthy 4 year old.

We have recently been told the preliminary findings of the autopsy report. Kara had a severe cleft palate, a small jaw, ears that were off-set, a small right lung and the right side of her heart was also small. None of these things were detected in our ultrasounds which we don't understand.  We are waiting for more test results that will hopefully tell us more about Kara's birth defects.

One thing that is extremely hard for me is I don't understand how this could happen after we already had a healthy child. My husband and I are going to get genetic testing done. I want another child so badly. I lost all my hopes and dreams of bringing home another child. I never thought that there was a possibility that I would only have one child. I can't go through this again.  Has anyone had a child born with birth defects and gone on to have a healthy child? Has anyone had a similar experience?  I feel so lost.

5 Replies

  • Hello and welcome to Share. I am so very sorry to hear of the loss of your beloved Kara.

    My first baby, Marco, was born 8 years ago at 29 weeks with multiple defects. He lived for about 4 hours before we had to make the impossible decision to discontinue life support, as his life was unfortunately just not sustainable. We did know of the problems starting around 20 weeks. The issue that my OB saw that alerted her to a problem was that he was smaller than he should have been on sonogram, so she sent me to a high risk OK where they picked up many more problems. The next 7 weeks were a whirlwind of testing. Instead of answers, it felt like each test yielded more questions.

    It is understandable that you are feeling confused and frustrated about none of these issues being detected on ultrasound. I'll tell you that even though some of Marco's issues were detected on ultrasound, a number of them were not - and most doctors gave us different interpretations at each ultrasound. It was very hard.

    Will you meet with a genetics doctor to go over Kara's final autopsy results? Hopefully so. That was helpful to my husband and me. She gave us a very thorough run down of everything. In our case, she said that it was most likely a "fluke". There were no chromosomal abnormalities. Therefore, it had to have been some type of genetic disorder, however she said there are so many genetic disorders, and his condition didn't fit any that she could find.

    Hopefully, whoever reviews the results with you can give you guidance on trying again.

    One thing I learned from Marco's loss is that nothing is guaranteed. Having said that, I will share that we did decide, given the information that our genetics doctor shared with us, to go ahead and try again. It was not an easy road, but 8 years later, we now have two healthy daughters, 6 and 2 years old. I was so scared during both of their pregnancies that something, anything, would go wrong. But I had hope, and I just took it one step at a time. The things that helped me the most were: 1. Writing here on Share; and 2. Attending a local loss and pregnancy after loss support group. Had it not have been from the support I received here on Share and in the support group I attended, I don't know where I'd be right now.

    Please know that you're not alone. The loss of a baby is so much more than the loss of a baby. It's the loss of your innocence, your hopes and dreams for that baby, and so much more. Remember to take things one day at a time.

    Keep us posted as you can.

    Hugs -
  • I know how alone you can feel when dealing with a child born with a birth defect. Birth Defect Research for Children has a parent matching program that offers support from parents dealing with the same conditions. If you sign up on the Birth Defect Registry you can contribute to the research by sharing your experience and get matched up with another parent for support. www.birthdefects.org/.../. I wish you well!
  • HI Welcome to share. I am sorry for your loss. I too thought I was having a normal healthy pregnancy 4 years ago with my second child after having a perfectly normal pregnancy and healthy baby with my first child. He ended being born at 37 weeks and without a functioning brain. We ended up having to take my son off of life support at 14 days old. We too were told it was most likely genetics and it was heart wrenching to hear that. To think that genetics was the reason and future babies could be at the same risk. It is a very difficult thing to have to hear and live with. It is also very difficult to have to decide what to do about having more children. My son's genetic doctor gave us options on how to go through another pregnancy and to help maybe lessen the risk. She also told us to wait a year and really let us get through our grief and have a chance to make the best decision for us. That was the best advice I got and it helped. I personally was all over the place those first few months about how I wanted our family to grow...as time passed I was able to start really focusing on what I thought was best for my family. I wish that you didn't have to go through a similar experience and I understand how lost you are feeling right now. The best advice I can give is give it some time to really let yourselves grieve and process all that has happened and to also see what the test results come back with. Many hugs. Nicki
  • In reply to I love my family:

    I feel your pain and astonishment. We recenlty lived something similar. I had a c section at 41 weeks cause of failed induction, and delivered my princess eleonore (first baby) on april 16th. She also was born with serious birth defects: small (no) jaw, cleft palate, ears and eyes abnormalities. She is still in autopsy, and tests were send tu the US (i live in chile) to help find a diagnose. We had soooi many ultrasounds, with 4 different drs, they only saw a small jaw and hipoplastic nasal bone all through pregnancy, otherwise a very healthy and vital little kicker. My dr is still in shock for beleiveinf in this "normal" pregnancy just ending in this bizzare second when everybody in the OR saw her and knew it was a serious not life compatible defect. We too are looking for answers, not to understand "why" still but we need to know this was a puncual thing and we are still able to try and conciebe a healthy baby, we too are doing genetics and stuff. I share my strength with u and your family, no
    Momma should ever live this tragedy.
  • I am so sorry, mabye she was needed in heaven.