[讨论]我女儿能治疗吗？

youbin8

<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt;"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">我女儿8个月，超声所见：</span></p><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;"><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt;"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">超声所见：</span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt; TEXT-INDENT: 21pt; mso-char-indent-count: 2.0;"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">心脏位置及连接一致。右房增大，右心室肥厚明显、右心腔小，左室收缩活动可。肺动脉闭锁，左肺动脉</span><chmetcnv wst="on" tcsc="0" numbertype="1" negative="False" hasspace="False" sourcevalue=".27" unitname="cm"><span lang="EN-US"><font face="Times New Roman">0.27cm</font></span></chmetcnv><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">，左肺动脉</span><chmetcnv wst="on" tcsc="0" numbertype="1" negative="False" hasspace="False" sourcevalue=".33" unitname="cm"><span lang="EN-US"><font face="Times New Roman">0.33cm</font></span></chmetcnv><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">，左、右肺动脉有汇合。房音隔缺损（</span><span style="FONT-FAMILY: 宋体;">Ⅱ</span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">）</span><chmetcnv wst="on" tcsc="0" numbertype="1" negative="False" hasspace="False" sourcevalue=".64" unitname="cm"><span lang="EN-US"><font face="Times New Roman">0.64cm</font></span></chmetcnv><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">，右向左分流。室隔完整，室隔凸向左室面。二尖瓣瓣环</span><chmetcnv wst="on" tcsc="0" numbertype="1" negative="False" hasspace="False" sourcevalue="1.83" unitname="cm"><span lang="EN-US"><font face="Times New Roman">1.83cm</font></span></chmetcnv><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">，三尖瓣瓣环</span><chmetcnv wst="on" tcsc="0" numbertype="1" negative="False" hasspace="False" sourcevalue="1.24" unitname="cm"><span lang="EN-US"><font face="Times New Roman">1.24cm</font></span></chmetcnv><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">，二尖瓣开放活动可，三尖瓣可见瓣叶组织，仅见极少量过瓣血流。左、右冠状动脉开口可见，可见冠状窦隙开放。左位主动脉弓。动脉导管未闭，肺动脉端</span><chmetcnv wst="on" tcsc="0" numbertype="1" negative="False" hasspace="False" sourcevalue=".11" unitname="cm"><span lang="EN-US"><font face="Times New Roman">0.11cm</font></span></chmetcnv><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">，细小侧支血管形成。</span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt;"><span lang="EN-US"><p><font face="Times New Roman">&nbsp;</font></p></span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt;"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">提示：右心发育不良综合症：</span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt;"><span lang="EN-US"><span style="mso-spacerun: yes;"><font face="Times New Roman">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">肺动脉闭锁</span><span lang="EN-US"><font face="Times New Roman"><span style="mso-spacerun: yes;">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span><span style="mso-spacerun: yes;">&nbsp;&nbsp;&nbsp;</span><span style="mso-spacerun: yes;">&nbsp;</span><span style="mso-spacerun: yes;">&nbsp;&nbsp;</span></font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">三尖瓣发育不良</span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt;"><span lang="EN-US"><span style="mso-spacerun: yes;"><font face="Times New Roman">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">右心室发育不良</span><span lang="EN-US"><font face="Times New Roman"><span style="mso-spacerun: yes;">&nbsp;&nbsp;&nbsp;&nbsp; </span><span style="mso-spacerun: yes;">&nbsp;</span><span style="mso-spacerun: yes;">&nbsp;&nbsp;</span></font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;;">动脉导管未闭</span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt; TEXT-INDENT: 21pt; mso-char-indent-count: 2.0;"><span lang="EN-US" style="FONT-SIZE: 10.5pt; FONT-FAMILY: &quot;Times New Roman&quot;; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: 宋体; mso-font-kerning: 1.0pt; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA;"><span style="mso-spacerun: yes;">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span><span style="FONT-SIZE: 10.5pt; FONT-FAMILY: 宋体; mso-bidi-font-size: 12.0pt; mso-font-kerning: 1.0pt; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA; mso-bidi-font-family: &quot;Times New Roman&quot;;">房音隔缺损，继发型</span><span style="FONT-SIZE: 10.5pt; FONT-FAMILY: &quot;Times New Roman&quot;; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: 宋体; mso-font-kerning: 1.0pt; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA;">
                                <span style="mso-spacerun: yes;">&nbsp;</span><span lang="EN-US"><span style="mso-spacerun: yes;">&nbsp;&nbsp;</span></span></span><span style="FONT-SIZE: 10.5pt; FONT-FAMILY: 宋体; mso-bidi-font-size: 12.0pt; mso-font-kerning: 1.0pt; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA; mso-bidi-font-family: &quot;Times New Roman&quot;;">冠状窦隙开</span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt; TEXT-INDENT: 21pt; mso-char-indent-count: 2.0;"><span style="FONT-SIZE: 10.5pt; FONT-FAMILY: 宋体; mso-bidi-font-size: 12.0pt; mso-font-kerning: 1.0pt; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA; mso-bidi-font-family: &quot;Times New Roman&quot;;"></span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt; TEXT-INDENT: 21pt; mso-char-indent-count: 2.0;"><span style="FONT-SIZE: 10.5pt; FONT-FAMILY: 宋体; mso-bidi-font-size: 12.0pt; mso-font-kerning: 1.0pt; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA; mso-bidi-font-family: &quot;Times New Roman&quot;;"></span></p><p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt; TEXT-INDENT: 21pt; mso-char-indent-count: 2.0;"><span style="FONT-SIZE: 10.5pt; FONT-FAMILY: 宋体; mso-bidi-font-size: 12.0pt; mso-font-kerning: 1.0pt; mso-ascii-font-family: &quot;Times New Roman&quot;; mso-hansi-font-family: &quot;Times New Roman&quot;; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA; mso-bidi-font-family: &quot;Times New Roman&quot;;">请问能治吗，怎么治疗？陈教授当时也没给出治疗方案，只是说如果动手术，只能缓解我女儿缺氧的状况，我该怎么办？</span></p></span>
) h2 w" _7 y9 j" V; o; J

csunn

手术要分期开。最后最理想的是达到小孩不紫，生活自理，不可能做成跟正常一样的心脏。

youbin8

能详细告诉我手术步骤和所需费用吗？谢谢！

csunn

<p>详细的手术方案要视你的肺动脉发育程度而定。</p><p>每次手术费用4万块左右。</p>

csunn

要做完导管，评估肺动脉发育程度后才能决定手术方案

pityfather

我宝宝现在68天大，43天时在贵中心心内科做完造影后医生说我宝宝的肺动脉几乎没有发育（跟头发丝一样），具体情况如下:
* H& M: y8 ~$ p出院小结中“病程与治疗结果”中提到：
1. 途径: RFV-IVC-RA-SVC              RFA-DAO-AAO-LV
2 o8 t5 o2 ~5 B* N! D. b8 K                                   |-RV
2. 血氧: DAO 97%
3. 压力(mmHg) RV=LV=94mmHg
7 Y2 Q8 a5 H" v& K+ f# K! z; ?; Y2 \4. 造影: 心房正位,房室连接一致,VCD对位不良型,肺动脉瓣、瓣下闭锁,左右肺动脉发育极差,有汇合,三支大侧枝血管供应肺血,无PDA、CoA.

' ^8 }: o' N6 p6 L+ m# l. R8 `在取报告的时候医生说我宝宝没有手术希望了。请问我宝宝这样的情况如果做手术能跟楼主的宝宝那样不青紫，将来生活自理吗？
（有时觉得自己这种想法是不是很自私？通过网络我也了解到这种复杂型先心患者如不能尽早手术矫治其生活质量是很低的，我不知道宝宝是不是愿意忍受病痛的煎熬？现在自己为宝宝做的决定是不是宝宝懂事后能够接收的？可是作为宝宝父亲的我真的不想失去她，我现在唯一能做的就是尽我最大努力让宝宝活下来，希望不久的将来小儿先心领域有重大的突破！）
. g, \% y; d- K愿天下宝宝都能健康、快乐！

csunn

回pityfather:你这样的没有机会手术.如果肺动脉发育还可以,那么手术可以基本接近正常.
1 W8 U5 R$ t! W/ N, |. ^' T$ T. p" q                      但小孩肺动脉发育太差了,根本没有办法做.