(Must Reading for Obstetrics Professionals)
This will cover a little bit of everything that has been discussed.
I had a very uneventful pregnancy. I had absolutely no problems until the last 2 months when my blood pressure kept rising. One day I went to the hospital for fetal monitoring and an ultrasound and was told I was going to have the baby that day because they found no amniotic fluid. The doctor explained to me that it could mean that my baby was dying, that it looked like the kidneys and liver had shut down. I was terrified! “My first child . . . was I going to lose her?”
They did a c-section and a good friend of our family who wanted to be there for the birth but had a cold was on the phone with the operating room and heard my baby’s first cry. When the doctors brought Kaitlyn to see her father, they pulled him out of the room with the family and lead him down the hall to a separate room and just opened the blanket and said here’s your baby. What a shock! He had no idea how to tell the family. There was a nurse with him and she was our angel, she took the baby from my husband and let each family member hold her all bundled up and then told the family that Katie had a little problem and showed her arm. My father said “It was a shock, but he had already bonded with Katie’s face and that he no longer saw the arm.
The first night in the hospital I cried, a night nurse came in and asked me if I wanted to talk. Told her that I didn’t know what to say or feel and she left. 10 minutes later she came back to the room with Katie and a bottle and told me that she needed to be with me. For 2 hours I poked, probed, fed, talked and cried but it helped me fall in love with this beautiful little child that I thought was going to die. The arm no longer seemed significant. Katie learned to use her feet to hold objects as well as her hand and stub. When she learned to roll she only rolled in one direction, so when she rolled across the floor up against the wall we had to turn her around to roll back again. She also learned to crawl just like any other child. She either crawled on her elbows or would bend her left arm to accommodate the length difference.
One of her best friends is our next door neighbor who is only 6 weeks older. This little girl broke the arm off of one of her dolls and her mother went to throw the doll away. She stopped her mother and told her that it was OK because she played with Katie and she did not consider the doll broken. From then on she called that doll Katie. Katie has never had a hard time dealing with other children, they ask to see her arm and she holds it out to them but if they go to touch it, she pulls it back and tells them “no, it’s mine”. This child has proven to her father and I that she can take on just about any problem that faces her, she is a little aggressive, but in a sense it’s good, because she won’t let anyone push her around. Katie is very sure of herself with or without her artificial arm. All of our friends and family have been very supportive of Katie and just believe that she is a remarkable little girl.
Sorry for rambling on but I hope that some of my experiences with Katie can help some of the younger children and their parents understand that really there is nothing to be afraid of or to worry about; there is something about a limb deficient child that makes them extra special and it’s not because of what they’re missing — it’s what they HAVE!!!
Just read a little bit of everything & although the circumstances were different with us, Danny was 10 months old when his amputations took place, I remember the first time seeing him after his first surgery & all the others. Also the reactions of family & friends their first time seeing him. Although reactions for the most part were handled very well, I think the not so good reactions stick out the most & so I’ll never get over even though I try. Because even though that first time seeing him was the hardest thing I ever had to deal with, it was still my baby & I couldn’t understand why others didn’t look at him in the same light. STILL DON’T UNDERSTAND!
Chris, This part of your last post sounds just like Jess. He is a bit aggressive, but is also very gentle with smaller kids and our dogs. He knows that “stumpy” can be a weapon and is very careful not to use it as such. I have thought of this a lot and I personally think that Jess is more outgoing and possibly aggressive because he already knows he has to work and fight harder to get what he wants or needs from this world. I just try to channel the aggression into assertion, but that will take a while I guess. By the way, I have read all of the posts about Katie, and I am very impressed with her accomplishments and with the way you have raised her. I hope I can do the same with Jess. Thanks for being a role model for those of us with younger kids. Bye Bobbi
Dear Chris and everyone, Well, I read your post this morning and I cried. Today is a ‘vulnerable’ day. It reminded me of when Matthew was born; he wasn’t breathing on his own at first but the midwives quickly sorted him out and he gave a quiet cry…. what a relief.
They bundled him up and brought him over to us, unwrapping the blankets to reveal his missing hand saying ‘but he has a good wrist’. I didn’t take it all in – it was like the best and the worst of times, such mixed emotions. The midwife later said in a way it would be better ( from a prosthesis point of view) if he had less of an arm. That made me angry, what were we supposed to do? We couldn’t change how he was born. Later on a few specialists came round for a brief visit and asked if we had any questions – I had just been through a long labor, no sleep and was in a state of shock – we had no questions until later.
The first night in hospital was so lonely, I hugged Matthew really tight and said ‘I love you so much, why did this have to happen to you?’ The midwives came and went but no one stopped to talk. Matthew was not even bathed until the second day – and only then when I insisted. More specialists came – ‘he will be OK – you don’t have any musicians in your family do you?’ she joked. Well, actually Rob plays the guitar really well, we always joked that our child would follow in his footsteps.
In order to get Rob to go home after visiting hours were over on the second night the midwives offered to take Matthew for a while. I didn’t sleep. The corridors were really quiet and my door was open. I could hear them talking about him – what a weird little hand he had. I just felt like picking him up and running out. It seemed I was in tears every time someone came in the room but no one stopped to talk – they just seemed to not know how to handle the situation so they ignored it. Only the cleaner passed the time of day, and an auxiliary nurse seemed to understand why I didn’t want to go and socialize in the dining room – instead she brought me my breakfast. When my community midwife visited the hospital she saw my name on the register and came to see me – she breezed into the room – she hadn’t been told there was a problem. She just gave me a hug and said ‘I know he will be OK because he has you as a mum’. I needed that.
The day we brought him home the sun was shining so brightly – now we were embarking on our new family life.
Thanks for sharing your story with us. It made me cry. I wish some of these nurses knew what impact they have in peoples lives (negative or positive). We also had a “angel” nurse when Graham was born. The night that Graham was born he slept in the hospitals nursery. I would go see him every hour, in between crying and trying to sleep. I remember one time going up to him and looking over him as he slept and I just started crying and crying. Then I felt an arm wrap around my shoulder and this nurse asked why I was crying. I said I felt that my baby was in so much pain. The nurse replied “maybe its because you’re in so much pain”. This helped me so much because then I realized that she was right, I was in pain but my baby wasn’t and that was OK.
Dear Chris & Tina,
Thank you for sharing your stories; I had just finished crying over Chris’ story when the tears flowed again with Tina’s! For me, it also brought back memories, although it was only a year ago when I gave birth to Gabriel. I went in for a scheduled C-section and to my utter terror, realized the anesthetic they had given had not taken effect after they had already cut into my belly! I did not feel the cut, thank goodness, but I did feel everything else. They finally knocked me out, but not before I heard the beautiful cry of my baby boy.
The next thing I remember, I am coming to and my husband is crying softly by my side stating there is a little problem with the baby’s hand. I was so disoriented and confused I could not understand what he was saying. No fingers? But that was so cliche, count the fingers and toes. I never cried a tear until our first visit to the orthopedic plastic surgeon because I had my mother repeatedly reassuring me that the doctors would “fix” it. She kept saying with the advances of medical technology they would create perfect little fingers. I trusted her and knew Mommy would never steer me wrong. So you can imagine my shock when two highly recommended surgeons suggested we just leave it alone, that Gabriel would do just fine. It was only after I joined I-Can that I finally started believing this to be true.
Thank you so much for sharing your experience with us. We all have those vulnerable days. You can’t be tough all the time. I’ve posted some long messages on some of my vulnerable days. It’s great to be able to “talk” to someone who will understand and I think the parents on this list do.
I sincerely believe that it is unforgivable for a medical institution to have treated you the way they did. The nurses, midwives and doctors have an obligation to meet your medical needs responsibly and sensitively. For a mother who just gave birth to a baby with a “difference”, that includes helping her with her emotional needs.
I encourage all parents and patients with experiences such as you describe to report this to the institution’s administration. Not for the purpose of getting even, but for the purpose of encouraging education. The administration has a responsibility for making sure that the employees are behaving in a manner that is professional, supportive and educational. I understand a person cannot always control how they feel, but they certainly can control how they behave. You should have never suffered the pain of hearing them gossip about your baby’s hand.
I know people don’t always mean to hurt when they do what they do, but unless we point out to them why what they did was wrong–they’ll just do it again.
Anyway, I didn’t mean to get on a soapbox. Those first few days, especially in the hospital, were very painful for me also. I understand exactly what you were feeling as you held your baby.
Hope tomorrow is brighter, Priscilla
Our nurses were all absolutely satanic, as was the hospital social worker. We did have one angel pediatrician though — the only person who congratulated us. It’s funny — everyone wanted us to be sad and cry, but there were only two people (this pediatrician. and my sister) who really allowed us to celebrate our beautiful, healthy baby girl. I’ve read several accounts now on this thread of parents who mourned when their child was born with a limb anomaly or even felt a bit of rejection of the baby, which is of course perfectly normal and valid, along with being the emotion everyone seems to expect us to feel. Am I the only one who went in the other direction and got angry if anyone dared suggested that having a limb anomaly was not a preferred condition? I’m not saying my feelings were superior or inferior or more or less valid–I’m just curious if any of the rest of you felt the same way.
I would also like to thank you for sharing your very touching experience. I cannot believe how insensitive people can be at times like these. I was lucky and didn’t have this happen in the hospital. In fact I had a nurse that would just come in and sit. Didn’t say anything. After a few minutes, I would just start letting it all out. She would just listen. I know she had a million things to do, but it meant the world to me that she would just “be there.” I have shared in past posts that I am a nursing instructor. Every year I have a discussion with my class of nursing students about dealing with parents who have a baby with a problem at birth. I have tried to pass on my own experiences and now I plan to share some of the insights I have read from I-CAN. One thing I always do now is congratulate the parents on the birth of their infant. Something I didn’t really think about before reading the posts. But there is MUCH to congratulate. I feel I have influenced over 100 nurses by now by sharing these things. I hope it makes a difference and that less parents will have to go through what you went through. A recent post suggested contacting administration and discussing your experience. Good idea. Another suggestion we could each do in our communities is offer to speak to OB nurses (or nurses in general) about the good and bad things that helped or didn’t help us when our babies were born to help them in their practices be even more caring.
I was so lucky in a way that Jess was born at the small community hospital here in town. The nurses were very helpful and loving and caring to my whole family. I say whole family because I mean WHOLE family. I am blessed with a large, very tight knit family whom all live within 5 miles of me. The night Jess was born I had just about 10 people in the room, so they all got to see Jess and his arm before me.
I never cried, though maybe I should have, I never felt that I had anything to cry about. I had my beautiful baby and so what if he was different? I mean, everyone I know and love is “different”, and Jess just showed his difference on the outside. My late mother was a certified eccentric and I am too I guess.
I have had times in the 5 years since Jess was born that I felt like it was so unfair that Jess going to have to deal with the prejudices and fears of the public at large. I remember crying once when Jess was just a baby, because I had seen another baby playing with linking chains (a baby toy); and I thought I’d never see Jess play with them. BOY, did he ever prove me wrong !!
The downside of the hospital here is that no one seemed to have any experience with a baby with a missing limb, and we were given no counseling, no Social service worker, nothing. I don’t know if it would have helped or hindered, but I would like to know that other parents would have the choice.
I am sorry that I have just rambled on and on, but the gist of this is that I think I was closer to your way of thinking, Jen, than anything else. I was lucky with the people in my life, still am, and I know it. I am truly sorry for all the terrible experiences that you all have had, and I can only hope that people like us getting together will make things easier on the parents and kids in the future.
Thanks again for listening Bobbi
I don’t know that I viewed it as a preferred thing, but I do remember getting angry that everyone was so overwrought at the time . . . that no one seemed to want to congratulate me for this beautiful creature that I had just brought into the world! I remember when the pediatrician at Quentin’s two-day check-up said “He’s a keeper!”…finally someone was proud of my baby!! Friends of mine who had just delivered their own babies really acted funny toward me…making me feel resentful that they didn’t think that I too had something to celebrate! All of my feelings during those first few days were sooooo mixed up…sometimes I wonder if in addition to writing a book about our children’s accomplishments we shouldn’t also write one about our own feelings so as to help new mothers (like ME!!) validate their own feelings during those rough times!
Just my two cents worth on training nurses…not anything to do with Quentin’s difficulties but I got VERY frustrated in the hospital because Quentin was brought to my room after the first night and left in the bassinet by my bed but I had difficulty reaching him or tending to his needs as I had just had a C-section. When I would “buzz” the nurses station (maybe twice in one day!) they acted very “put out” that I had bothered them. I remember laying there listening to him cry and feeling guilty for calling for help! Add in there my frustrations as Quentin and I tried to learn this whole breastfeeding thing and I left the hospital with a very bad feeling about nurses in general. Since that time we have had some very sweet ones for Quentin so my attitude has improved but thought I’d add my two cents worth on nurses training!! Robin
Reading your post, reminded me of how badly we were treated at the hospital where Nigel was born. We got to find out about his hand only when I asked to breast feed him. I had a c-section, so I needed help, and my husband sent for the resident mid-wife. All this time we had not picked Nigel up yet, I had seen him for a brief moment when I awoke, he was all bundled up with his little head sticking out. My husband dared not pick him up; he was afraid of dropping him. No one told us anything. Anyway, the midwife came in, picked Nigel up, started unwrapping him, and looked at me and said “You know about his hands, right”. She was standing at the foot of my bed. She pulled his hand up (the one without the fingers) . . . I saw it and I was hysterical, and wouldn’t take him. She had the insensitivity to ask “do you still want to breast feed” ! My husband had to send them out of the room, and poor Nigel was screaming from hunger. It was only after about 2 hours later that I calmed down enough to ask for Nigel to be brought into the room again. Anyway, like you, throughout my five day stay at the hospital, we only had a single brief visit from the pediatrician and the orthopedic surgeon. Both told us that there was nothing that could be done, and no explanation as to what the cause was. The support came from my family and friends, who straight away accepted Nigel.
Till today, my only source of support has been from them, and from our friends on this list.
Anyway, Tina, thanks for sharing your story with us. Gave me a chance to ramble on too!
Chris, I just sat and stared at your post for about 5 minutes, trying to decide if I was courageous enough to share about Beth’s birth. It’s kind of funny – I can share with Beth all of the wonderful moments when she was born (one of her favorite bedtime stories is requested with “Mommy, tell me about when I was born.) I seem to have selective memory. It isn’t very often that I can look at the whole emotional picture without tears and distress. Then I pull out those good memories and I can find some balance again. Someone here mentioned “It was the worst of times – It was the best of times.” I think that is fairly accurate.
My pregnancy reminds me of Grandpa’s stories about walking 10 miles to school barefoot in 15 foot drifts. You know, it sounds too big to be real. Tim and I were so excited when we found out we were pregnant. Tim immediately took me to a bookstore, so we could find just the right books. We were going to be the perfect parents for our perfect child. (Which, I want to note, we do have – the perfect child, I mean.) Well, about 1 1/2 months along, I developed hyperemesis. That means I would throw up every 20 to 30 minutes for no particular reason. I spent the next 4 1/2 months in and out of hospitals. I would go to emergency, be admitted, live on IV’s for five days until I could manage to keep down jello and mashed potatoes, and then be at home for two day until it got so bad I had to go back and do it again.
The worst part was not the throwing up; it was the medications the doctors were trying in order to stop me from throwing up. I spent the entire time constantly worrying what this was doing to my child. (The doctors have since assured me that they had no affect on Beth – the congenital defect “decision” had been made by the cells before I even knew I was pregnant. One doctor did suggest after Beth was born that perhaps the hyperemesis was nature’s way of trying to abort a faulty fetus. I am so glad that did not succeed.) Well, the best part was I learned very quickly that I have an extremely supportive family. While we were in California, one of my family or good friends came to see me at least once a week. (I was in a hospital a good 2 hours drive from my closest relatives.) When we moved to Iowa, the first thing Tim did was put me back in the hospital. I did not even see our new home. It was then I found out that Tim’s family was just as supportive as mine. Blessings in the midst of trouble.
Eventually, that cleared up and Tim and I began to really look forward to being parents. A week and a half past her due date ( I was running out of patience) contractions began. We called everyone to give them warning and headed off to the hospital. My sister told me that she knew it was going to be an easy birth because I had had such a tough pregnancy. After 38 1/2 hours of labor, we decided on a ceasarian. I was awake, as the baby was not in danger. Tim was holding my hand. Then we heard Beth’s little cries, even before the doctor took her out. The doctor told us we had a little girl and then sent the baby out of the room. I was confused – why didn’t I get to see her. I knew I couldn’t hold her, but I thought the nurse would at least show her to me. The doctor asked if “Dad” would like to accompany his new daughter to the nursery, and Tim responded with “I think my wife needs me right now.” Bless his heart. I am slightly claustrophobic, and they had to tie my arms down for the surgery. A few minutes later the nurse came back and said they needed Tim to go with them. They showed Beth to him, so that he could come back and tell me. When he returned, the first question I asked was “So, does she have all of her fingers and toes?” I can’t believe I said that. I know that it is the stereotypical response, but I’ll never forgive myself that one. After Tim told me, I cried. And yet I was still so happy. I have always wanted a girl, so I could call her Beth. And now I had one. That was joyous. But she was missing a limb, and for that I grieved. I think I had been up for far too long to be able to handle this. And then I got moved to the recovery room, and they brought me my baby. And, you know, once I had her in my arms, nothing else mattered. I had the perfect little girl that I had always wanted. Nothing changed that.
Over the next few days while we were in the hospital my emotions were on a roller coaster. I loved my daughter – she was “perfect!” But I also had to grieve, not for Beth’s real arm, but for the picture of my baby that I had carried with me for nine months. I found that the nursing staff was wonderful! They even found a cot, so Tim could sleep in the same room with Beth and me. The problems I had were with some of my acquaintances who pitied both me and Beth. My boss came to see me the day after Beth was born. She spent the entire time moaning about how great a tragedy it was. I don’t think she has an ounce of compassion or empathy.
Although Tim and I had some tearful times, I think my family 1800 miles away in California had it even harder. We had Beth – we knew firsthand all of the joy in loving her. It was much harder for the long distance relatives to see that.
Today, almost 6 years later, I know that our daughter is the perfect little girl. She is full of smiles, frowns, joys, frustrations, obedience, perverseness, and everything else that every 6-year-old has. We wouldn’t change her for the world! And yet I know that not a week goes by without a small cloud of sadness floating through my mind as I see her difference. But it doesn’t stay very long anymore. The joy of having Beth as my daughter outshines anything.