資料"How Parents and Children Build a Relationship in the NICU; From Narrative of Parents Who have Infants with Trisomy 18"

SAKURAI Hiroko 2008/02/29
立命館大学グローバルCOEプログラム「生存学」創成拠点 20080229
立命館大学生存学研究センター,生存学研究センター報告1,157p. ISSN 1882-6539 pp.171-189

last update: 20151225

How Parents and Children Build a Relationship in the NICU
From Narrative of Parents Who have Infants with Trisomy 18

Hiroko Sakurai
(Graduate School of Core Ethics and Frontier Science, Ritsumeikan University)

Issues of How Parents and Children Build Relationships in the NICU
In Japan, Perinatal Care Facilities with the NICU (Neonatal IntensiveCare Units) have been established since the 1980s. Since then, patientsin need of high-level care as a result of congenital disorders or problemsoccurring at the time of delivery have been taken to the NICU. Currently,there are approximately 360 NICU facilities in the country.
The NICU is a peculiar place. The NICU is lit by lights 24 hours aday on infant incubators neatly arranged. Inside the incubators are nakedchildren, several and tubes are attached to their hands, their legs and theirmouths. Electrocardiogram machines next to the incubators continuallymake an unnatural “beep, beep...” sound by the incubators. At the NICUwhere the author stayed for about two and a half months, everyone had toput on a white coat and a hat and then only after washing ones hands onecan finally see one’s child. The unit is a special place within a hospital. Infact some NICU facilities are blocked off by iron door.
To doctors and nurses who work in the NICU, it is a place wheredifficult treatments seem ordinary. To parents, however, it is surely aplace of extraordinary scenes and times, a place where parents and theirchild experience life and death, sadness, joy, pain, warmth and confusion inthis apparently inorganic place.
If a child is healthy, the relationship between parents and their child is built continuously from birth through child-raising. However, if a child hasa disability such as a congenital disease, the relationship is momentarilytorn apart. The NICU is an environment in which raising of a childbegins in the absence of the parents. Recently, parent-child contact hasbecome possible in earlier stages, but parents have to accept the situationoccurring without understanding what is happening to their child.
I would like to examine how situation children with trisomy 18 andtheir parents build a relationship in the peculiar space of NICU.

“What is Trisomy 18?”
Trisomy 18 is a chromosomal abnormality, characterized by delayedgrowth and development, as well as a host of complications. It occursbecause there are three 18th chromosomes. In the 1960s, John R. Edwardsand others reported the condition for the first time. It is said to occur inone out of 3000 to 8000 persons, and 94% with the condition children diebefore birth. In other words, 6% of these children are able to live in this world, and although they have trisomy 18, they can be said to have greatsurvival power. According to textbooks of children born with trisomy 18,the rate of their survival to one year old is 10% ; one out of ten of thesechildren experiience their first birthday. However, in recent years, somepersons can live until teens or twenties in the U.S. and Japan.
In Japan, reports have been made on the various complications andand the hardness of the vital prognosis of children with trisomy 18, butamong the parents and at medical care sites, there has been a dearth ofnecessary information on how to perform medical care and manage health,and how the children and parents should actually share their lives.
Let me introduce a true story: When a genetic doctor went to an NICU at the request of a neonatal doctor, he saw a baby struggling tobreathe. The neonatal doctor said “I want you to diagnose whether thechild has trisomy 18 or not”. If the child had trisomy 18, the doctor wasnot going to insert an artificial respirator into the child, yet if the child did not have trisomy 18, he was going to insert it into the child. Since theresult of a chromosomatic test was not immediately available, he made thediagnosis on the spot by the child’s facial expressions and other features,then decided whether or not to insert the respirator into the child basedon the information.
While there are some hospitals where doctors try such proactivetreatments such as tracheotomy or surgery for children with trisomy 18,there are other hospitals where doctors take such actions as consideringlimiting treatment after the diagnosis is made, and this has broughtconfusion to the medical staffs.
I gave birth to my oldest daughter in March 1997, but she passedaway after 75 days because of trisomy 18. In 2001, I established apatient advocacy group called “The Trisomy 18 Support Group” (http://www.18trisomy.com/) in Japan, and now serve as its representative.Medical staffs tend to think that “life extention causes great pain to thechild, and places a burden on parents”. On the other hand, parents areconfronted with a disease they have never heard of and to make mattersworse, there is no treatment information. Moreover, doctors’ explanationsare full of jargon. Furthermore, parents are told that their child is going to die soon. Parents naturally panic when they face a situation that relatesto important moments in which their child’s life. In such a harsh situation,the importance of child’s existence to the parents and parent’s feelings oflove to children are beyond the harshness of the disability and prognosis.The Trisomy 18 Support Group has kept conveying the feeling of theseparents to medical staffs.

“Studies Based on this Report”
This report is based on the results of a survey on actual conditionsat NICU units an investigation that was conducted by the Trisomy 18Support Group in Japan. This study was about children with trisomy 18was the first to be conducted on a national scale in Japan. This studyfollows health studies of children with Trisomy 13 and 18 which wereconducted by the American “Support Organization for trisomy 18, 13and Related Disorders in U.S.A” (SOFT) (http://www.trisomy.org/index.php) and University of Utah Pediatricians. This study is the world’s firstcomprehensive study that covers the medical care, lifestyle, welfare, andpsychology of children trisomy 18.
The subjects of the study were Trisomy 18 Support Group members.The study was conducted from May to August in 2003. 125 surveys weresent to the members via postal mail and 88 surveys were returned; that is,I received a response rate of 70% . 81 responses came from parents whosechild was born, and 7 came from parents who had had a stillborn baby.The contents of questions concerning emotional care data were: 1.the existence or non-existence of emotional care at the time of explanationfrom the doctor and or the first meeting with the child; 2. the existence ornon-existence of emotional care when the child was born and the parent’s satisfaction the care; 3. The type of emotional care parents desire ofmedical staffs. The contents of questions concerning the medical data were: 1. the history of pregnancy/delivery; 2. Post-natal management; 3.History of Rearing.

“The first Meeting with Our Child”
What feelings do parents have from the time they learn of thepregnancy until their child’s delivery while they watch the mother’s bellygrow and look at ultrasound pictures of the fetus? Most parents pray forthe birth of a normal, healthy child, purchase new baby products, anddream of their new family and life. However, what emotions do theseparents have when they find out that their child has a disability?
Here is a summary of some impressions at the time of the firstmeeting with their child:
・ They felt pity for the child because the child had various kinds oftreatments such as the insertion of tubes.
・ They didn’t want to accept the child as their own because of theinfant’s external malformation.
・ Until they saw the baby through the ultrasounds, they had thoughtthe baby’s face looked a little bit like a rabbit’s. However, when theyheld the child in a towel, they were shocked to see that the baby’sface was uglier than what they had thought.
・ “Small! So very small! Why on earth is my child so small?!”
・ They felt so sorry for giving birth to the child in this state. Theythought the child was cute, and they loved the child. Yet all theycould say was “I’m sorry”.
・ They felt so sorry for not being able to bear a healthy, normal baby.They had various kinds of feelings, from confusion about the externaldeformity, differences between the image of the child they had imaginedand the actual child, feelings of anxieties a for the burden for the child’streatments, and feelings of sorrow that the child might die.
On the other hand, there were also parents who felt their baby cuteor the joy of finally meeting their child:
・ The child was very cute and beautiful. “My child is the cutest babyI have ever seen.”
・ The child still had pain due to the caesarian section, but parentswere happy to hold the baby for the first time.
・ “The child is really doing his/her best.”

When parents find out that their child has a disability, they used theinternet to find information on the disease, or keep reading experiencenotes of other parents with disabled children. They want to findinformation about the prognosis and growth of children who have thesame disability.
With the spread of the internet, increasing numbers of parents arecreating home pages and sharing their experiences. Along with diseaseinformation, progress, and pictures of children, in many cases, they alsorefer to “Heaven’s Very Special Child” by Edna Massimilla. “Heaven’s VerySpecial Child” is included in the pamphlet “Stronger and Brighter - ForParents with Down Syndrome Children”, produced by the Japan DownSyndrome Society (formerly “Koyagi no Kai”). The original poem is said tohave been entrusted as a message to Japanese parents who have childrenwith disabilities to former Toyo Eiwa Women’s College professor ToshikoNiwa by Sisters of the McGuire Memorial Home in Pennsylvania in theUnited States (Kida, Mitsushiro. “Deformity Medicine (Senten Ijo no Igaku)”,Chukoshinsho., 1982. pp. 49 - 52.).
When most parents read the poem, they are in the depths of despair,having received the news, and feel sympathy with words. The psychologyof this may be that in the midst of the struggle to accept reality, they findacceptance by temporarily placing their child in another dimension as a “child given from heaven”. There is also an independent change from “parents whohad a disabled child” to “parents chosen by their children”. Put differently,it may be a departure from the social labeling of “parent of a disabled child”and feelings of personal responsibility. A. Solnit and M. Stark have said asfollows: “Within ‘the birth and mourning of a disabled child’, a ‘disabled child’s birth’ is ‘the death of the child [the parents] expected’. If that mourningprocess is not maintained and stabilized, the longing for the healthy childthey hoped for will haunt them like a ghost, and continue to prevent thefamily from becoming close to their real children.”

“The ‘Routinization of Disaster’ in the NICU”
Daniel F. Chambliss has said that even if certain things are thoughtas special, tragic, and grave in the outside world, they become ordinaryin hospitals. He calls this the “routinization of disaster”. The routinizationof disaster consists of the routinization of emotion, routinization of death,routinization of the world, and routinization of outsiders. (Chambliss, DanielF. Beyond Caring: Hospitals, Nurses, and the Social Organization of Ethics.London: University of Chicago Press, 1996. pp. 19, 24, 39, 51, 57).
The routines of medical staffs are extraordinally values to parentsplaced in non-daily spaces. And the routines of medical staffs deeply hurtparents and children unconsciously.
Parents desperately struggle to accept the complex feelings they havefor their child as they meet for the first time. They defer to the values ofthe medical staffs, trying to act like “good parents”, and try to deepen theirbond with the child. Amidst this struggle, while they are trying to accepttheir actual child gradually, the routine words and actions of medical staffsare in fact setting back the parents’ feelings.
1.Word of Birth
Medical staffs did not say “congratulations” to the parents who hadchildren with disabilities. “Congratulations” are only given to the parentswho delivered healthy children. Since they have created a new life, theyshould be told “congratulations”. Whether the child has disabilities or notis a totally different matter. Most members of the trisomy 18 Support Group said that the births of their children were not celebrated, and theywanted to be told “congratulations”. They were filled with a desire fortheir children’s birth to be accepted as a valuable thing.
・ They wanted some proof to feel that their children were vigorousenought that everyone respected them.
・ It is necessary to have an attitude of saying “congratulations”, to allchildren no matter how sick some children might be.
・ They wanted their children to feel that their life was blessed andthey had the right to be loved by everyone.

2.Word of Death
Sometimes, in the presence of the parents’ child who lives, it isemphasized that the child has no chance of survival, or that the child haslittle time to live. In hear the name of the disease for the first time parentspanic. Some parents are deeply hurt by medical staff’s heartless words, as the parents are normally in the pain and despair of losing their child.
In the case of trisomy 18, many parents receive explanations thatlimit theatments such as “we will not treat proactively”, or “we will not operate”. In some cases, the treatment policy is decided before their child’s birth. It cannot be said that appropriate treatments based on children’s condition are not chosen, but that doctors one-side deny possibilities oftreatments so that they can live at ease. As a result, the parents feel thattheir child’s life has been abandoned by the medical treatments. There is some background for this. First, there is generally a lack of supportto enable the child to live. Second, there is a lack of explanation anddiscussion between medical staffs and parents in the decision process ofthe treatments for the children.
・ In the case of trisomy 18 , even if they are born, they don’t surviveso long. Therefore, it is not worth performing a caesarian section.
・ When a tube was inserted into a child’s mouth, or when a respiratorwas removed, etc., the parents were always told “the child mightdie” by the doctor.
・ Parents were told “the doctor is busy with children who are living”,even though their child was living, too”.
・ Parents were told “in the time left for the child” repeatedly.
・ Right after birth, parents were asked by the doctor “Would you like to attend to your child at the infants deathbed at home?”

3.Child abuse
The more serious the disabilities are, the more medical care theyrequire. Parents have seen medical staff members mishandle children’sbodies. When parents feel children are not taken care it leads to mistrusttoward medical staff. Sometimes parents have heard remarks from themedical staff that make the parents feel as though “the child is being usedas a research subject”. In other words, there is an issue of whether or notmedical staffs respect or value children and their parents. The medicalstaffs involvement, who supports children and there parents if theyrespect the existence of children. Yet, if not, it hurts them deeply.
・ Several medical staffs members held down a crying screaming childwhen it was being treated?
・ A mother was asked “Why did you have a child like this? Did youdo something bad?”
・ “When I practiced breastfeeding, although my child did not havethe jaw strength to feed, medical staff thrust the child’s face into mybreast. I still cannot forget the face of my suffering child at that time.”
・ “When my child was gravely ill, the medical staff that made thetreatment laughed, and I felt that “this is just a part of their job to them”.
・ One parent was told “I have never seen a child live till one year old; I felt it was as if the child was a research subject.

4.Hiding of disabilities
Children with more serious levels of deformity tend to be hidden away.They are partitioned off in the narrow spaces the NICU, or their incubatorsare put in the back corners. They are “given consideration” and kept outof view. Medical staffs may be try to be kind to them. However, from theparent’s perspective it seams that the staff feels the need to hide the child.
Many parents also have affection for the typical “overlapping finger”deformity found in trisomy 18 children. Some parents felt that the sixthfinger which occurs in hyperdactylia was “cute like a cherry blossom” and felt that “my child was playing with the finger as it was their own toy.”The parent’s viewpoint doesn’t only focus on the deformity and disability, but on another dimension. They feel that the act of hiding shows themedical staff’s valuation that having a disability is misery.
・ The child’s incubator was left in the very back of the NICU.
There were other cases in which, the child’s symptoms wereexplained, no one listened to the parents feelings without interception, orno one has stayed with the parents during difficult times. These make theparents feels isolated due to the business of the medical staff’s daily work.
These things influence not only the difficulty of communication between parents and the medical staff in the NICU, but also the buildingof parent-child relationships.

Parents experience of care by medical staff (n = 76 % )Yes (% ) No (% ) NA(% )
Got information of child’s symptoms and condition. 81.6 15.8 2.6
Got information about support groups,etc. 38.2 59.2 2.6
Courteous physical care was provided our child. 92.1 6.6 1.3
Our child was treated as a responsive, cute baby. 90.8 6.6 2.6
We were able to personally bathe child or changechild’s deapers. 89.5 9.2 1.3
We were able to personally give milk to child orperform infusion or suction treatments. 67.1 31.6 1.3
Parent was given verbal comfort, encouragement,and advice. 90.8 6.6 2.6
Parent’s feeling were listened to without interruption. 76.3 21.1 2.6
Workers chatted about things with parent. 81.6 15.8 2.6
Consideration was given so that parent couldexpress desires and requests. 77.6 19.7 2.6
Medical staffs stayed with parents during difficult times.. 52.6 44.7 2.6
Parents did not always necessarily have such experiences, “the staffallowed me to give care such as changing diapers and bathing”, or “Theyallowed me to give milk, or perform insertion, or suction treatment.”One problem is particular is that giving milk is usually done at intervalsaccording to the medical care the hospitals’ schedules and often dies notbit with the parent’s system, and was not determined during parent’svisiting hours.

“Building of Parent-Child Relationships Within the Medical Care System”
Inside the NICU, the parents’ interaction with their child is monitored bythe medical care system. The medical staffs think of interruption as a risk to the establishment of the “parent-child relationship”. The standards for buildingparent-child relationships are made within the medical care system.
These include the number of visits, how many times breast milk isintroduced, whether the parents speaks to the child, whether parentsproactively asks about the child, and whether they gladly performkangaroo care. Among these, bringing breast milk is a symbolic event thatshows “parentness”. Parents who do not do these acts are judged to be “badparents”.
Facilities with twenty-four hour of visiting at the NICUs are much more common than ten years ago, but there are still a lot of facilities that limitthe visiting hours. The people who have interaction with the child most arethe medical staff members. Parents feel that “even though I gave birth tothe child, it’s the nurse who’s raising it. ”When the parent goes to visit thechild with hopes of building a relationship with the infants, the nurses know their child better than they do. The parents then feel frustrated. Some evenfeel as if their child has been taken hostage. They can’t say what they wantto say. Sometimes they think “If I say that, maybe they won’t change mychild's diapers”, or “maybe the doctor won’t check on my child”, or “maybethey’ll be mean to my child when I’m not around”, and they become anxious.There are many cases where parents hold back from saying something,even if there’s something they want to do for their child.

“Being As They Are”
Parents who have suddenly been told about their child’s illnesswant someone to understand the situation they have been placed in. Byfeeling that their feelings are accepted and understood, parents minds aresupported. Having someone stay there with them, and receiving gentleand kind words and encouragement from a fellow human heals parents.
Also, parents’ feelings swing every day. They move between hope andfear about the condition of their child, and the way medical professionalscare also affects them. Some parents also worry daily as they watch theirchild with tubes and respirators attached.
In the NICU, parents tend to act as strong parents. Sometimes theyreceive comments from the medical staff such as “you are parents, so youhave to hang in there”, or “You are the parents of the child?!”, which canbe painful for the parents. These comments can be construed to containthe medical staff’s values of what a “good parent” is. Parents then put a lidon burdensome feelings such as pain, anger, and concern, in order to be a“good, hanging-in-there parent”. It is important that parents have a personwho listen to them, and also that they have a place to express their painand anger. As the parents are often in shock and feel isolated, when thereis someone to accept their feelings, the feel at ease that they are not alone.

Time to Be With the Child
Even parents who couldn’t accept their child at first was graduallybuilt a parent-child relationship as time goes by. On the other side of theirfeelings of “if only you hadn’t been born”, they remand his/her short-lifeas important. Many parents cannot accept their child 100% from the very start. Some parents gradually more parent-child interaction, and developthe relationship. Medical staffs tend to be more abrupt. Perhaps becausetime is short, they force parents to build a parent-child relationship with the child. The speed of time passage might be different between parentsand medical staffs.
・ When a parent learned that their child has disabilities, they weren’table to accept it at all. They were filled with disgust. But after theyheard the child had less than a year before they die, they felt a littlebetter and tried to do their best to raise their child. Now, the childis over one year old, and having far exceeded all expectations, isgrowing stronger. The parent had at first thought that if the childhad continued together with them several years with its high levelof disabilities, they would come to hate the child, but now they don’t feel that way. They could, though, understand there such parents’feeling.
・ When one parent was told their child was trisomy 18, they deniedthe child’s existence for a while. They had thoughts such as “ifonly they hadn’t been born”, or “if only they had been lost”, or “itwould be better if they died before I get attached”. The parent wasconfused about whether it was okay to accept the child in theirheart, or if it was okay to deny their existence still they die. Theywanted someone to say “This child has a precious life, and it is avaluable life that has been born, so let’s do all we can do.” Thoughthey are confused now, they feel that they should embrace the childfor its short life, and love it so there would be no regrets. Actually,the child is shining and flexible, and gives the parent a sense ofpeace.

Parents’ Words
There are three word that are particular to the Trisomy 18 Support Groups.
One is “the rock hand (“gu no te” like the hand of a fighter)”. From the medical staff’s point of view, the overlapping finger is one of the producedby trisomy 18 deformities. It is also one of the ways of confirming atrisomy 18 diagnosis A picture of. this locked first appears on the cover ofthe handbook of trisomy 18 Support Group handbook. By putting it on thecover, we show medical staffs that it is a “cute hand”, a “hand of affection”,and a “the source from which our child gives us happiness”.
The second is “acceptance of our child (“waga ko juyo”)”. The child medical staffs see and the child the parents see are different. Becausemedical staffs differentiate the children by disease name, they see by theirdisabilities. For example, there is a way of calling a child “____, a trisomy18 baby”. However, parents do not call their child that way, and they wantthe medical staffs to compliment their child’s cuteness, and to show anattitude and parents the child. Parents don’t just want the medical staffto pay attention to the disabiled part of their child. Also, though theyalways disappointed by the the announcement of their child’s illness, theyto gradually find some hope in their gradually growing child. This is not afuture hope for their disabled parts, but a hope they have for their child’sgrowth.
The third word is “angel day (tenshibi)”. In cases of trisomy 18,parents are given a notice of their child’s death alone with the doctor’s announcement of the birth. The short life means birth and death arealways. While sharing and valuing the short limited time with the child,the word “death” adjoin, and carry fear. Looking at it differently, theydistinctly feel "life” every day. Parents don’t call it the “death day”, but“angel day”. Parents who can’t accept their child’s death continue to keeptheir relationship with the child with although they have simply returnedthe angel to heaven. They continue child-rearing by participating in thepatient group in substitution of their child who no longer has a body. The patient group is supported by this kind of feeling, even though after the child passed away the parents related to medical care continue.
The words the patient group use with the medical staffs atendagainst the routinization of disaster and unconsciousness slips. Parentchildrelationship building is not spoken of based on the term the medicalcare system. In medical care, specialization, parents have pain becausethey can’t put into their own words. In the NICU is special space, “Parentsare amateurs, and shouldn’t talk about their child’s care”, “Doctors havethe initiative in the child’s treatment. This is true within the medicaltreatment team and in the relationship between the doctor and parent.”The parents, who are usually listener to the medical staffs, uses jargonof the parent groups becomes the speaker. These distinctive words, fromparents who have placed themselves in the medical care system, can beaccepted, as they are fresh to the routinized medical staffs.

When a disabled child is born, building a parent-child relationship isno longer an individual affair but one which is placed under the monitoringof a NICU, it is a part of medical care. And there is no private space there,and the parents and child become part of the medical staffs’ daily scene. There, in that unusual space, not only the children, but also the parentsbecomes subject to the monitoring of the medical staffs. On the other hand,from the parent’s point of view, the NICU is the place where their childlives, and is an important place for building the parent-child relationship.
In the NICU, parents have no way to express opinions to the medicalstaffs. Though the parents might have different values than the medicalstaffs about the handling of their children or the words or acts of theprofessionals, it is difficult for them to say so. There is a holding back inthe feeling that their child is being held was hostages, with medical staffsdoing what they should be doing as a parent. Though a parent should go through pregnancy, birth, and raising a child, the more serious the child’sillness and handicap, the more the medical staffs, led by the doctors, haveperform the rule in the NICU..
The values of the medical staffs, created within the medical caresystem, are a hindrance for building parent-child relationships, and aresometimes painful for parents. Often, when a parent fails to come to visitthe child, or refuses to have the child move home, these sorts of actionsare expressive of the parent’s resistance to the medical staffs, and may beindicative of the pain of trying to act like a good parent.The act of speaking in the distinctive words created by parents isdesigned to change the value of routinization of disaster by medical staffs.The habits and values professionals have inherited may be causing themto forget obvious to most people. Routinization in the NICU invites furtherdisaster. Though the death of their child is one of the most important inthe life of the parent, even the death of their child becomes a mere dailyoccurrence to the staff. Also, routinized events create the forcing of valuesand arrogant attitudes.
For parents to face their children’s disability means carefully faceown hearts. This may be only of painful, difficult feelings. However, asparents overcome them and place themselves in the medical system, theyto weave together a story of parents and child in order to fill in the gapwhere their relationship has been interrupted.

(For reference)
Edna, Massilla

(木田盈四郎 1982『先天異常の医学』中公新書)

Heaven's Very Special Child

A meeting was held quite far from earth.
"It's time again for another birth",
Said the Angels to the Lord above,
"This Special Child will need much love
His progress may seem very slow,
Accomplishment he may not show;
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent;
We want his life to be content,
Please, Lord, find the Parents who
Will do a special job for You.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for the gift from Heaven.
Their precious charge, so meek and mild
In Heaven's Very Special Child".

* I'd like you to acknowledge having deleted, in this text page, some figures which were published in original text. These figures was quotated from Hashimoto, Yoko. NICU and Emotional Care, p. 117. Medica Publishing, 2000.(File preparer: OKADA Kiyotaka

□立命館大学グローバルCOEプログラム「生存学」創成拠点 20080229 『PTSDと「記憶の歴史」――アラン・ヤング教授を迎えて』,立命館大学生存学研究センター,生存学研究センター報告1,157p. ISSN 1882-6539

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