When I found out I was pregnant, I was so full of hope, excitement, love- but I was also nervous, apprehensive and scared! I am 27 and this is my first pregnancy. So, I went through my first trimester feeling all those same emotions and having the same thoughts. And then… came the BOOM! And it was a major BOOM! I found out the sex of my baby- YAY! It’s a GIRL, on June 6 of this year, and on June 7 my doctor called to tell me about the results of my ultrasound. The phone call was not a joyous call, as all the others I had recieved during the first trimester. This phone call was filled with “there seems to be major abnormalities with the development of your baby” my doctor told me. The call began with talk of her kidneys, brain, heart, size, and ended with the word termination. I was in tears, complete and utter tears. Termination? What do you mean termination? Why? For what…? She instructed me to visit a genetic counselor that Thursday. Still in tears and filled with fear I called my mother and I cried and cried in the phone, telling her of the phone call I had recieved and all things she told me. That Thursday, my boyfriend, mom, sister, father and I went to visit the genetic counselor. I had another ultrasound, after the ultrasound, me and my family were taken to a room where we were told the findings were the same, and again the word termination was brought up not only once, but six times (I could not help but count). I asked her “How could I even think of terminating? I don’t even know what’s wrong.” She then went to talk about the three major syndromes she could possibly have, and asked if I wanted to have an amnio to rule them out, and find out what is wrong. I agreed, and I had an amnio (a painful and somewhat traumatizing experience). The results which took 10-14 days to come back were the longest days ever. After 4 days, I recieved a call that my my baby did not have Down Syndrome. Within that time, I had my regualr check up appointment, this time I was visiting one of the other OB doctors on the team. And he not even knowing me, how I felt, what I thought or cared said termination to me, this time putting a time frame on it. So, there I was crying more tears, feeling more pressure. Praying and praying everyday for a sign, an answer from God. Then my doctor called and instructed I go to U of M Mott Children’s Hospital for a third opinion. Of course I wanted a third opinion! One week after hearing the news, I went to U of M, I had another ultrasound and talked to another doctor and genetic counselor. I must say this time the conversation was different, yet, I still did not know what was wrong with my baby. This counselor was more compassionate and informative. Although her compassion and information still did not stop my tears, yet this time I was not the only one crying, my mom, my sister and my boyfriend were in tears as well. The counselor asked me what had me so distraught and in even more tears and broken speech I cried out, “I am so sick of hearing the word termination and I don’t even know what is wrong with my baby! I don’t want to hear that word ANYMORE!” In that meeting the doctor and counselor went through the ultrasound, this time they were able to see everything the other doctors could not see, but this time there seemed to be more. Now it was the nose, shape of the head, water on the abdomen, dilated ureters- and this time, they could see the area in the back of the brain that the other two doctors could not see. I cried and cried and cried. The couselor asked me what my biggest fear was, I felt I couldn’t speak. But through my tears, and shortness of breath I spoke “Having a child with mental disabilities, because everyone wants a normal child right?” She asked my boyfriend and through his tears he said the same thing. The couselor spoke of percentages, rates of growth and many other things, things which were so overwhelming I almost couldn’t comprehend it all. And after all that, the conversation ended with talk of termination. This time a real time frame was given to me (I had two weeks and 5 days to make a decision), in the mean time, she scheduled me to have a Fetal MRI to look at my babies brain. Monday after the appointment at U of M, I received a phone call from a nurse at the second doctors office I visited and had the amnio. The results were in and I was told my baby had 4p-Deletion. I asked the nurse what that was, she did not know. And with access to the internet, one would think I would immediately log on and search what is 4p-deletion, but I did not. My prayers did not stop, the stress mounted and now the stress was even more. Not only was I trying to cope with this news of my baby, I was coping with my boyfriend. My boyfriend walked away from me, he told me that if I did not terminate he would leave me. I mean, I had not even made a decision yet, I didn’t even know what 4p-deletion was, or what the severity of it is. He didn’t even care enough to ask me, what I thought or believed. Three days later, I got on the internet and looked up 4p-deletion. I sat in a parking lot and cried, cried and cried asking God to help me, to speak to me, to explain this all to me. I called my mother and told her I wanted to speak to her and my sister, I drove over to my sisters house and told them I looked up 4p-deletion and read about the syndrome and told them it is called Wolf-Hirschhorn Syndrome. They both told me they knew already and had looked it up three days ago when I told them. My sister pulled up videos on YouTube and I watched 3, two were of Norrah and the third, unfortuantely I cannot remember the girl. When I reached the third video I broke down. I couldn’t watch anymore and I cried. So many tears and time was winding down, and still I had not made a decision. Counting down the days. The couselor from U of M called and because I knew of the results we talked and decided a Fetal MRI was not necessary. She began to talk of termination and told me that two days would be reserved for me if I decided to go that route. I told her I was not sure, and that I had to go home and speak to my familiy first, luckily I had a half day at work- June 24. I was 22 weeks. I left work and immediately drove home. I sat and talked to my mom and finally expressed to her what I was thinking, feeling and what I believed. I couldn’t speak to them before, it seemed I couldn’t speak to anyone about what I was thinking, feeling or what I believed. I certainly couldn’t talk to my boyfriend, he certainly did not want me to keep her and expressed it every chance he got. My family kept telling me this would be one of the hardest decisions I would ever have to make, and to make sure whatever decision I made was one I could live with. During all this, I spoke to God everyday, all day praying asking for his word. Upon speaking to my mom I decided that I couldn’t terminate and that I put it in God’s hands. My boyfriend kept screaming “quality of life, quality of life” to me, and all I could think was, how could I take her life when I haven’t given her the oppotunity to live whatever quality of life God has promised for her. I couldn’t take her life, when her life was not mine to take, and because I put it in God’s hands, I let go and let God. I called the counselor back and told her I was not terminating the pregnancy. My sister cried tears of joy. My mother was happy and my father said to me, “You remember what I told you when you told me you were pregnant?” I replied “Yes.” And he replied, “It’s time to be a grown-up, a woman.” I continued to cry. Yet, this time my tears were not of fear or confusion, they were of joy, joy for feeling free of the stress, empathy for my unborn daughter and blessings from God and having such a strong and supportive family. I discovered this website a month ago and it has taken me till now to post the beginning journey of my unborn baby girl, Clover. And again as I am typing this, I am crying. My tears are happy tears, I thank God everyday. Recently, I was shopping and found a cross with the verse from the Bible “For this child I have prayed.” I broke down in tears in the store and bought it. I am approaching the third trimester and I continue to pray for my Clover.
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As I sit here and cry with you… please know that we are all here. ALL HERE. You can do this. Alexander is the greatest gift. Clover is going to be amazing. Life is not written. A delay doesn’t mean never – only a delay. I have another post I really want to put here – I just can’t figure out how to upload the videos, etc. It is called the miracle of a medically fragile child. http://www.alittlesomethingforme.com/2011/07/miracle-of-medically-fragile-child.html
These videos and stories are along the same lines. Clover is going to be amazing. You are blessed. I will pray for peace to come to you every day. And for peace to come to your boyfriend. Please feel free to connect with any of us at any time. Even in times of worry or frustration. We will cry with you and celebrate with you. Kristen (and Alexander)
I am so sorry that you have had a rough time with everyone telling you to terminate. Arin my 4 month old WHS child is my 3rd child and a very big surprise. With her everything was fine until 28 weeks and the OB told me that we were going to lose her and sent me to Denver as we lived in Western Nebraska and now due to access to the proper doctors for her we are in Delaware. That doctor immediately did an ultrasound and an amnio and waiting for the results were horrible and on Feb 18- D day we got the word that it was WHS. While it is scary I would not give up my little peanut for the world. She is my cuddler my older 2- 8 yrs and 21 months do not like to cuddle much anymore. The best advice that I can give you is to take things one day, and sometimes even 1 hour or 1 minute at a time. You will get through it. I am also on Facebook if you have access to that and would like to chat. Brianna Horney-Hauck is my full name. You can also email me at briannahauck@yahoo.com at anytime with questions etc.
Good luck and welcome to the group. Can’t wait to see her first pictures!
You are an incredibly strong, incredibly amazing woman-I want you to know that. Clover could not ask for a better mother. The road will not be easy, I confess, but you are not alone. As Kristen said, we are ALL here for you. I just told another mom today that I believe in angels, and I believe that God carefully selects who he entrusts his most special ones to. It is not an easy club to belong to, but you will find that you will face all that comes after Clover arrives with a spirit unparalleled. She is your good luck charm; cherish these remaining weeks of your pregnancy and know that when she makes her grand entrance, there will be many, many people behind you sendings prayers and love!
I faithfully read all of the stories on this website and am truly moved by each and everyone. Your story especially struck a chord in my heart for 2 reasons. One being that 23 yrs. ago we adopted a baby boy who was considered “difficult to place” at the time. His birth mom was young and single and I thank God everyday for her courage in choosing life for him. Also, our precious little grandson is Brodie who happens to be our whole life! At times I get so choked up with emotion for him that I can’t even speak. He is a blessing beyond compare. And so is your little Clover! We will be praying for Clover, you and your loved ones as you continue on this very special….and yes, at times, very scary journey. But the love and joy you gain through your little one will outweigh everything else. And know that you will never be alone. You will make new friends on this website who will encourage you greatly. And God is always with you. No one understands God’s ways or reasons but His enduring strength and love are never ending!
Welcome to the Wolf Hirscchorn Community.
I am Norrah’s proud Mama. We had the luxury of not knowing her diagnosis (despite a complicated pregnancy) until she was 10 months old. Over that time I got to know her and her spirit/passion/perserverence and so once we received her diagnosis I was already certain she would prove the prognosis wrong – AND SHE HAS.
I am filled with joy at the responsibility and care with which you made the decision to give sweet Clover an opportunity to LIVE and live ABUNDANTLY. She will be amazing, like Kristen said, and she will change you – for the better.
Norrah is in many ways just like a typical 3-year-old. In some ways she is delayed but the margin of delay is getting smaller as she continues to mature and spend time with typical kiddos. There is SO MUCH HOPE for these children and I believe that much of their development is dependent upon our own willingness to believe in them!
Humbled and blessed by your choices for sweet Clover. Cannot wait to “meet” her!
(We are in the process of closing down our old blog KnowingNorrah.blogspot.com – but if you want to continue to follow Norrah we have a new blog at OurLittlePond.blogspot.com and you can always email me at knowingnorrah@gmail.com)
I think these other ladies have said it very well, but I will say it again, Clover will be amazing! And you will be a great mother, you already are! And you’re not alone. Keep your faith in God and in Clover! Emma has brought joy to our lives in ways I didn’t even think about before. I am so thankful God blessed me with such a sweet little girl. Love and hugs to you and your family!
As I have sat here and cried while reading your post and then cried more after reading the other responses, I too want you to know that you are not alone. We are all here to support, love and cry with you. Our story is a bit different as we did not get Dylan’s diagnosis until after he was born but I want you to know that Dylan is truly a blessing for our family. He brings a smile to my face every day. He has also been proving the doctors wrong left and right. Never give up hope for Clover and enjoy the rest of your pregnancy. She is your little miracle. Hugs to you.
I also keep a blog about Dylan’s journey – http://www.ourlittledillpickle.blogspot.com
🙂 Kristy and Dylan
Thank you all for your uplifting words and encourgement.
Welcome! I am so happy you did not terminate:). Clover will amaze you in all she does. She will be so much more than the doctors, medical journals and internet say. We have our own blog as well. http://thankful4Tanner.blogspot.com. I actually just posted Tanner’s birth story which took me 2 years to do:). It’s an emotional journey but a very rewarding one. We will be with you and supporting you all the way.
Clover is..and will be the best gift of your life! Aldrick my son 24, WHS..I would not be the person I am today if not for my angel..he lives at home and all he ever asks for is LOVE..hugs,kisses! Now, thats not so hard to provide, the rest just comes naturally! U have been n
blessed!<3
I also am sorry you have had such a hard time with the decision of whether or not to keep Miss Clover. I am glad that God gave you the peace to keep her. When my daughter was faced with the same decision we also opted to keep Blake. Even though we only got to keep him for 4 months we would not give up one second of the time. He was the sweetest baby i have ever seen. He was so snuggly. You will be glad to know your daughter. I will keep you both in my prayers.
Crying!!! Everytime I read a story about the journey that we all take, I am brought to tears. It brings back all those same emotions that we have all once felt. Thank you for sharing your story and I can’t wait to hear more about your sweet Clover.
Autumn
http://www.gotygo.blogspot.com
the same thing happened to me im 20 weeks preg and midwife said he was small and refered me to a senior person and they said baby was small + he did not have a stomach bubble suggesting he had a asophigal atresia + he heard a heart + kidney defect they fort it was ds so i had a anoeostantisis owww very painful to find out at 29weeks my baby had whs i was so angry thinkin y me but they continued trying to make me have a termination up36 weeks giving me info off the internet i got induced 38 weeeks and there saying to me your baby may not servive but my little figter is here alive and kicking after spending 4 n half months in hospital i finally got him home
Thank you for sharing your story. Your little girl will be the most precious thing in your life. You will love her like you never imagined you could love someone. The love you get back in return is unbelievable. My son is nearly two and was diagnosed just before he turned one. His health is an ongoing struggle and some days I feel like i cant go on. I take one look at his beautiful blue eyes and it makes it all worth it. It’s going to be a painful journey sometimes because when they hurt, you hurt a thousand times more. But I promise you that once you meet your precious angel there will not be a day that goes by where you doubt your decision to have kept her.
I, too, have a child with WHS. His name is Tate and he is the most amazing person to have ever entered into my life. Unlike your sweet girl, he wasn’t diagnosed with WHS until he was about five months old, due to him beginning to have seizures. As parents, my husband and I face tremendous health and developmental-related challenges with Tate everyday, but the good out weighs the bad in so many ways! After you look at your sweet baby girl, you won’t care that she has this syndrome, because she is your sweet angel and you will want to do whatever it takes to make her life on this earth happy and comfortable. It’s going to be hard, but it will be soooo worth it. I completely agree with you….even if I had known that my Tate was going to have WHS before he was born, I wouldn’t have done a thing differently. I love him so much and he is the light of my life. I am a better person, because of him-he makes me WANT to be a better person. Because of him, I am more compassionate and empathetic towards others, more than I had ever imagined that I could be. Your sweet girl will be the same for you. You are saving her life, but she’ll save yours and make your life completely whole. My thoughts and prayers go out to you and your baby girl for a safe pregnancy and labor, and a beautiful life together. 🙂